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  4. The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The event’s sponsor, the National Organization for Rare Disorders (NORD), said it will still take place at the Renaissance Cleveland Hotel, and this year’s Rare Impact Awards at the nearby Rock & Roll Hall of Fame and Museum. Zebra T-shirts on sale at the 2019 NORD Patient & Family Forum in Houston. (Photos by Larry Luxner) In the spirit of music, NORD is partnering with the nonprofit group Sing Me a Story to create songs for kids with rare diseases. Sing Me a Story works with more than 4,000 songwriters to help turn the stories that children in need write and illustrate into music. In this instance, through sponsorship by Horizon Therapeutics, the organization is focusing on the rare disease community. “The one thing that every child has regardless of circumstance is imagination, and it’s our goal to bring those imaginations to the world through music,” said founder and songwriter Austin Atterberry, 36, whose nonprofit is based in Woodbury, Minnesota. Children ages 3 to 17 entered a raffle for the chance to win a trip to the forum and have their story told through an original song. Atterberry said the songwriter likely will reside in the Cleveland area and perform the song at the forum’s welcome reception. A Nashville love story Sing Me a Story also will talk to other children with rare diseases at the forum and potentially add the musical version of their stories to the nearly 1,000 songs it has produced. Individuals can support a song by donating a 50/50 split to Sing Me a Story and the partner organization from which the story came. In return, they will get the original music file. “When you have a rare disease you feel really isolated and when you tell your story you start to learn you’re not alone,” said Debbie Drell, NORD’s associate director of membership. Participants at the 2019 NORD Patient & Family Forum in Houston. NORD, a patient advocacy group, began as a grassroots rare disease coalition created to pass the Orphan Drug Act of 1983. Nearly 300 such groups belong to NORD, which focuses on increasing awareness of rare diseases, improving access to therapies, and raising money for research. Bringing patient experiences to life through music embodies NORD’s mission for its Living Rare, Living Stronger Forum. “Who doesn’t want to maximize our precious time we have on Earth?” Drell asked. “You do that by making connections and learning, being inspired and sharing your story.” Atterberry’s own story began when he moved to Nashville after graduating from Northwestern University. A young woman moved into his apartment complex, and to impress her Atterberry became a music volunteer at her workplace, Vanderbilt Children’s Hospital, in 2010. They now are married with two children. Rare Impact Award winners In an attempt to involve the children he worked with, Atterberry decided to take whatever story they came up with and turn it into a song. He would go home, record an mp3 file and give it to the kids’ families. Atterberry later put the process online, and in 2011 incorporated the organization. For the songwriter, bringing music to children with rare diseases is a chance to show outsiders the community’s resilience. Marshall Summar, MD, left, and NORD President and CEO Peter Saltonstall at the 2019 NORD Patient & Family Forum in Houston. “The bravery, the courage they all show to forge through the world and oftentimes forge their own path when it comes to patient advocacy is truly inspiring,” Atterberry said. Sing Me a Story has worked with rare-disease patients before. One of them is Ariella, a 15-year-old girl with urea cycle disorder, who wrote about the difficulty of living a normal life. Singer-songwriter Amy Lowe turned Ariella’s story into an upbeat song. “My music is love, love, love away from the crowds / I write the story, I paint the scene / I fill it with glory inside my dreams,” Lowe sings in the chorus, ending with these two lines: “You see a part of me it’s not the heart of me / I’m not what I seem.” The Living Rare, Living Stronger forum offers resources for caregivers, patients and family, as well as opportunities to meet other people in the same situation. It also includes the Rare Impact Awards. This year’s winners include Grammy Award-winning rock guitarist Peter Frampton, as well as Sen. Sherrod Brown, D-Ohio, and 10 other top achievers. In addition, NORD will present a lifetime achievement award to Janet Woodcock, MD, director of the Center for Drug Evaluation and Research at the U.S. Food and Drug Administration. The post NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum appeared first on Sarcoidosis News. Link naar het originele artikel
  5. National Sarcoidosis Awareness Month begins on April 1 without the fanfare of years past. We can’t participate in walks. We can’t gather for events and fundraisers. And news cycles are focused on the global pandemic of a virus that attacks the lungs, not a rare disease that infiltrates the lungs of more than 90 percent of those diagnosed with it. But we are here. We are fighting. This year, more than ever, it’s important to raise awareness about sarcoidosis. The invisible battle We are easy to miss. Our numbers aren’t large. According to the Foundation for Sarcoidosis Research (FSR), an estimated 150,000-200,000 people in the United States have sarcoidosis. I’m among those for whom it is an invisible disability, with no outward signs of its presence. The cluster of inflammatory cells known as granulomas caused by sarcoidosis are most often found in the lungs and lymph nodes, but they can occur just about anywhere, including in the skin, kidney, heart, and eyes. Coming together You’re unlikely to meet someone with sarcoidosis in your daily life, if ever, as has been my experience. Battling a rare disease people don’t often share or understand can be lonely and difficult. Connecting with others helps, and a variety of options are available. Plenty of national and international sarcoidosis patient societies exist, and you can find them listed at the World Association for Sarcoidosis and Other Granulomatous Disorders website. FSR rolled out a “Stop Sarcoidosis” support group on Inspire for patients and caregivers to connect. The group now has a mobile app. Here at Sarcoidosis News, you can get information, news, and firsthand perspectives of living with sarcoidosis from columnists Kate Spencer, Charlton Harris, and me. Help bring awareness to sarcoidosis With the absence of events and news to get the word out this year, it’s up to us to rise up. Flood social media. Purple up the month with awareness. If you are out of the house, wear a sarcoidosis T-shirt. If you are indoors, decorate your windows. On World Sarcoidosis Day on April 13, FSR is encouraging everyone to post selfies in purple shirts to social media with the hashtags #WorldSarcDay and #StopSarcoidosis. You can download a printable World Sarc Day sign to hold in your photo at the FSR website. We are warriors As I’ve previously noted, managing sarcoidosis can require extraordinary strength. This is a trait we can draw upon now to get through the current crisis. We are warriors. We are resourceful. We are used to fighting. And we go into battle, often while immunosuppressed, and conquer the days. This month, let’s make people aware. We are here. We are fighting. And with the current COVID-19 pandemic, that fight has become much harder for some of us. Everyone can help by being mindful and doing everything possible to help stop the spread of the coronavirus. Whether you are healthy or battling an illness or disease, we are all in this together. *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Changing Tactics for National Sarcoidosis Awareness Month appeared first on Sarcoidosis News. Link naar het originele artikel
  6. Results of a Phase 1b/2a clinical study evaluating ATYR1923 in people with pulmonary sarcoidosis are likely to be delayed due to the COVID-19 pandemic, its developer, aTyr Pharma, announced. ATYR1923 is a first-in-class therapy being developed to possibly different types of interstitial lung diseases (ILDs) — a group of disorders, including pulmonary sarcoidosis, characterized by scarring in the lungs and poorer lung function. This investigational therapy works by altering the activity of the protein neuropilin-2 (NRP-2), which plays a role in limiting inflammatory responses, including lung inflammation and associated scarring/damage. An ongoing Phase 1b/2a clinical trial (NCT03824392) is evaluating ascending doses of ATYR1923 in up to 36 people with pulmonary sarcoidosis. It is intended to determine the safety and tolerability of ATYR1923 at six months of use, as well as its immunogenicity (ability to trigger an immune response) and pharmacokinetics (how the therapy moves through, and is processed by, the body). Early efficacy will also be assessed. This trial may still be interested in patients thinking of enrolling at sites across the U.S.; contact and other information is available here. A pre-planned interim (mid-study) analysis from the first 15 trial participants suggested that the therapy is generally safe and well-tolerated; no serious adverse events related to ATYR1923 were reported. These findings are in line with previous data from a Phase 1 study (ACTRN12617001446358) conducted in healthy volunteers. Full trial results were expected to be released by September, but aTyr announced that these data will likely be delayed. “As the COVID-19 pandemic continues to impact daily life, we remain committed to the safety of our employees as well as our physician partners and the patients who are participating in our ATYR1923 Phase 1b/2a clinical study,” Sanjay S. Shukla, president and CEO of aTyr, said in a company’s press release. “This global public health crisis has been challenging for clinical trial conduct worldwide, and we now anticipate there will be a delay in topline results from our study, which were previously anticipated in the third quarter of this year,” Shukla added. We are working closely with our investigators to implement procedures which will allow for rapid completion of this study when the demand on the health system eases.” aTyr joined with the nonprofit Foundation for Sarcoidosis Research (FSR) in developing and sponsoring trial. The company also reviewed last year’s accomplishments it its release, including entering into a license agreement with Kyorin Pharmaceutical to develop ATYR1923 in Japan. The agreement was recently finalized. “We remain committed to completion of our Phase 1b/2a study as expeditiously as possible as we work to introduce an entirely new class of therapeutics to treat unmet needs in interstitial lung diseases,” Shukla said. The post Pandemic Likely to Delay Results of Trial into Pulmonary Sarcoidosis Treatment appeared first on Sarcoidosis News. Link naar het originele artikel
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    PATIËNTEN INFORMATIE MBT CORONA VIRUS VOOR: Mensen met de ziekte van Crohn of Colitis Ulcerosa of IBD Mensen met een reumatologische aandoening Mensen die afweersysteem onderdrukkende geneesmiddelen of biologicals gebruiken Mensen met een afweerstoornis De poliklinieken ontvangen veel vragen van patiënten met betrekking tot het coronavirus. Patiënten met een stabiele ziekte komen best niet naar het ziekenhuis. Als u geen acute klachten heeft, kan u afspraak worden omgezet in een telefonische afspraak. Neem contact op met de polikliniek interne geneeskunde (043-3875100) om een afspraak om te zetten naar een belafspraak. Afspraken voor medicatietoediening op het infuuscentrum gaan wel door. Wij merken dat ons telefoonlijnen door de drukte in het ziekenhuis overbelast zijn. Heeft u medisch inhoudelijke vragen, of vragen over uw specifieke situatie, neem dan liefst contact op via mail. Wij doen ons best uw vragen zo goed en zo snel mogelijk te beantwoorden en bellen u zo nodig terug. Patiënten onder behandeling bij de afdeling immunologie: immunologen.internegeneeskunde@mumc.nl Veel van onze patiënten hebben door hun onderliggende aandoening een verminderde werking van hun afweersysteem of medicatie en/of biologicals die zorgen voor een licht verminderde weerstand. Het voorkomen van een besmetting is daarom de eerste prioriteit. Voor al onze patiënten gelden de algemene RIVM maatregelen: · Was je handen regelmatig met water en zeep · Vermijd contact met ogen, neus en mond met ongewassen handen. · Hoest en nies in de binnenkant van je elleboog · Gebruik papieren zakdoekjes · Ga zo min mogelijk naar plaatsen waar veel mensen zijn of bij elkaar komen. Reis niet met het openbaar vervoer. De taxi is geen probleem. · Voorkom contact met mensen die hoesten, niezen of koorts hebben. Dit geldt ook voor naaste familieleden. · Werk ook waar dat kan, thuis. Overleg bij lastige situaties met je werkgever of, als jullie er niet uitkomen, met de bedrijfsarts. · Gebruik papieren zakdoekjes en gooi deze na gebruik weg. · Geef elkaar geen hand en vermijd lichamelijk contact in algemene zin (bijvoorbeeld het geven van zoenen). Houdt 1.5 meter afstand van andere mensen. · Blijf zoveel mogelijk thuis. Vermijd drukke omgevingen of sociale evenementen, tenzij dit absoluut noodzakelijk is. Hieronder valt ook het bezoek aan het ziekenhuis. Daarom worden afspraken op de polikliniek zoveel mogelijk omgezet in telefonische afspraken. Afspraken voor medicatietoediening op het infuuscentrum gaan wel · Blijf zeker thuis als je verkoudheidsklachten hebt. Kom niet naar het ziekenhuis, ook niet voor een geplande controle, maar overleg eerst telefonisch met je behandelend arts, de Verpleegkundig Specialist of gespecialiseerde verpleegkundige Voor de ontstekingsremmende medicatie geldt het volgende advies: · Infliximab : doorgaan met gebruik · Adalimumab: doorgaan met gebruik · Golimumab : doorgaan met gebruik · Etanercept: doorgaan met gebruik · Certolizumab: doorgaan met gebruik · Rituximab: doorgaan met gebruik · Tocilizumab: doorgaan met gebruik · Sarilumab: doorgaan met gebruik · Vedolizumab: doorgaan met gebruik · Ustekinumab: doorgaan met gebruik · Abatacept: doorgaan met gebruik · Anakinra: doorgaan met gebruik · Ixekizumab: doorgaan met gebruik · Secukinumab: doorgaan met gebruik · Brodalumab: doorgaan met gebruik · Tofacitinib: doorgaan met gebruik · Baricitinib: doorgaan met gebruik · Upadacitinib: doorgaan met gebruik Prednison: overleg met uw behandelend arts of u versneld kunt afbouwen, indien u reeds een lage onderhoudsdosering slikt (5 mg) kunt u deze handhaven · · Methotrexaat: doorgaan met gebruik · Leflunomide: doorgaan met gebruik · Hydroxychloroquine: doorgaan met gebruik · Apremilast: doorgaan met gebruik · Mycofenolaatmofetil: doorgaan met gebruik · Ciclosporine: doorgaan met gebruik · Tioguanine: doorgaan met gebruik · Mercaptopurine: doorgaan met gebruik · Azathioprine : doorgaan met gebruik Verder willen wij u verwijzen naar de website van het RIVM (043-3875100) waar je veel informatie kunt vinden. Je kunt ook bellen naar het RIVM met vragen over het coronavirus: 0800-1351 (8.00 – 20.00 uur). VEELGESTELDE VRAGEN Kan een corona-infectie een opvlamming van mijn ziekte veroorzaken? Nee, daar zijn geen aanwijzingen voor. Moet ik doorgaan met mijn immunoglobulinen behandeling? Ja. Indien u koorts (38 graden of meer heeft) neemt u eerst contact op met uw behandelend arts of Verpleegkundig Specialist. Moeten patiënten met een stabiele ziekte het advies krijgen om niet naar het ziekenhuis te komen? Als u geen acute klachten heeft, heeft dit de voorkeur. Neem contact op met de polikliniek om een afspraak om te zetten naar een belafspraak. Ziekenhuizen doen hun uiterste best je zo goed mogelijk te helpen ook in deze lastige tijd. Hebben patiënten die weerstand-onderdrukkende medicatie gebruiken een verhoogd risico om corona te krijgen? Mensen die weerstand-onderdrukkende medicijnen gebruiken hebben in het algemeen een iets hoger risico op infecties (griep, blaasontsteking, enz), maar er is waarschijnlijk geen extra verhoogd risico op het krijgen van een corona-infectie. Als je het coronavirus oploopt, is er een licht verhoogd risico dat de ziekte ernstiger verloopt. Daarom is het voorkómen van infecties extra belangrijk. Wat kunnen mensen zelf doen om hun risico op het krijgen van een corona-infectie zo klein mogelijk te maken (het voorkomen van besmetting)? · Was je handen regelmatig met water en zeep · Vermijd contact met ogen, neus en mond met ongewassen handen. · Hoest en nies in de binnenkant van je elleboog · Gebruik papieren zakdoekjes · Ga zo min mogelijk naar plaatsen waar veel mensen zijn of bij elkaar komen. Reis niet met het openbaar vervoer. De taxi is geen probleem. · Voorkom contact met mensen die hoesten, niezen of koorts hebben. Dit geldt ook voor naaste familieleden. · Werk ook waar dat kan, thuis. Overleg bij lastige situaties met je werkgever of, als jullie er niet uitkomen, met de bedrijfsarts. · Gebruik papieren zakdoekjes en gooi deze na gebruik weg. · Geef elkaar geen hand en vermijd lichamelijk contact in algemene zin (bijvoorbeeld het geven van zoenen). Houdt 1.5 meter afstand van andere mensen. · Blijf zoveel mogelijk thuis. Vermijd drukke omgevingen of sociale evenementen, tenzij dit absoluut noodzakelijk is. Hieronder valt ook het bezoek aan het ziekenhuis. Daarom worden afspraken op de polikliniek zoveel mogelijk omgezet in telefonische afspraken. Afspraken voor medicatietoediening op het infuuscentrum gaan wel · Blijf zeker thuis als je verkoudheidsklachten hebt. Kom niet naar het ziekenhuis, ook niet voor een geplande controle, maar overleg eerst telefonisch met je behandelend arts of gespecialiseerde verpleegkundige Algemene en specifieke maatregelen om besmetting te voorkomen Moeten patiënten hun afweer-onderdrukkende medicijnen stoppen? Nee, de meeste medicijnen blijven zo lang in het lichaam dat het niet zinvol is om deze te stoppen. In geval van een langdurig stabiele ziekte kun je wel overleggen met jouw eigen arts of het mogelijk is om jouw infuus uit te stellen. Dat heeft als voordeel dat je infectierisico iets afneemt, maar als nadeel dat de kans op een opvlamming en complicaties van je ziekte toeneemt. Indien je er prijs op stelt om jouw infuus-afspraak te verzetten, neem dan zo snel mogelijk contact op: liefst via email. Voor een overzicht en advies per medicatiesoort, zie hieronder het lijstje met medicijnen. Voor mensen die ontstekingsremmende (afweer-onderdrukkende) medicatie gebruiken geldt het volgende advies: · Infliximab : doorgaan met gebruik · Adalimumab: doorgaan met gebruik · Golimumab : doorgaan met gebruik · Etanercept: doorgaan met gebruik · Certolizumab: doorgaan met gebruik · Rituximab: doorgaan met gebruik · Tocilizumab: doorgaan met gebruik · Sarilumab: doorgaan met gebruik · Vedolizumab: doorgaan met gebruik · Ustekinumab: doorgaan met gebruik · Abatacept: doorgaan met gebruik · Anakinra: doorgaan met gebruik · Ixekizumab: doorgaan met gebruik · Secukinumab: doorgaan met gebruik · Brodalumab: doorgaan met gebruik · Tofacitinib: doorgaan met gebruik · Baricitinib: doorgaan met gebruik · Upadacitinib: doorgaan met gebruik · Prednison: overleg met uw behandelend arts of u versneld kunt afbouwen, indien u reeds een lage onderhoudsdosering slikt (5 mg) kunt u deze handhaven · Methotrexaat: doorgaan met gebruik · Leflunomide: doorgaan met gebruik · Hydroxychloroquine: doorgaan met gebruik · Apremilast: doorgaan met gebruik · Mycofenolaatmofetil: doorgaan met gebruik · Ciclosporine: doorgaan met gebruik · Tioguanine: doorgaan met gebruik · Mercaptopurine: doorgaan met gebruik · Azathioprine : doorgaan met gebruik Als je afweer-onderdrukkende medicatie zelf per spuit toedient, en je hebt een temperatuurverhoging (meer dan 38 graden), dan is het advies om de volgende injectie uit te stellen totdat je hebt overlegd met jouw arts. Wat moeten mensen met weerstand-onderdrukkende medicijnen doen als iemand in hun directe omgeving besmet blijkt met corona? Volg de landelijke adviezen: neem contact op met de lokale GGD. Bij koorts >38 graden en hoest of kortademigheid moet u ook contact opnemen met u arts, Verpleegkundig Specialist of gespecialiseerde verpleegkundige Als je het coronavirus oploopt: Als je toch het coronavirus oploopt bij gebruik van afweer-onderdrukkende medicatie, is er mogelijk een licht verhoogd risico dat de ziekte ernstiger verloopt. De kans is echter heel groot dat je weer beter wordt. Neem altijd contact op met jouw behandelend specialist als je: · Koorts hebt (temperatuur is boven de 38 graden) · en verkoudheidsklachten hebt zoals hoesten en keelpijn of kortademigheid Advies over werk en thuiswerken Het advies van het RIVM is duidelijk: mensen worden zoveel mogelijk opgeroepen om thuis te werken. Als mensen weerstand-onderdrukkende medicijnen gebruiken, hebben ze in het algemeen een iets hoger risico op infecties. Extra voorzichtigheid is dan geboden. Overleg bij lastige situaties met je werkgever of, als jullie er niet uitkomen, met de bedrijfsarts. Meer informatie Op de website van de rijksoverheid vind je heel veel antwoorden op vragen over het coronavirus. Deze informatie wordt dagelijks aangevuld. Op de website van de NOS worden ook veel vragen beantwoord. Ook vind je veel antwoorden op de meest gestelde vragen op de website van het RIVM. Het RIVM heeft een algemeen telefoonnummer voor vragen over het coronavirus: 0800-1351
  9. Social distancing is the new norm. It reminds me of the two months I spent in the hospital after my first spontaneous pneumothorax. While hooked up to chest tubes and oxygen, I was pretty much sheltered in place. In the beginning that wasn’t too bad. I had my television, several good-looking nurses taking care of me, and my tablet. A good friend of mine is a respiratory nurse at the hospital, so she frequently looked in on me after her shift. Most of the nurses in that ward know her, so that made me feel like I was getting a little extra treatment. She put an app on my tablet that allowed me to get free movies. That was a big win. An even bigger win was when one of the transport guys told me about a free app with access to all of the movie, sports, and news channels — yuge win for me! So, I was equipped with most of the creature comforts of life I’m used to. At least, other than full internet, my own cooking, and an occasional adult beverage. I believed I was ready for the long haul. Hours become days, then weeks. Each day became a new adventure. My day would start with blood draws at 5 a.m., then the nurse would have me sit up in a chair. They do this for lung patients so fluid doesn’t settle in the lungs. Then the doctors would visit and update me on my progress, if any. Each day I became increasingly sheltered in place to what would soon be my new normal. Each hospital hour seemed more like days. Since I was attached to the wall by oxygen and suction lines, there was very little I could do on my own. I managed to do some bedside exercises and I think I’d watched every episode of “Law & Order: SVU” and “Bar Rescue.” My kids turned me on to “Impractical Jokers” as well. As the days passed by with no promising news from the doctors, I became very concerned and often questioned if I would ever recover or be able to return home. I tried to remain positive. The medical staff were really cool in making sure I didn’t become so despondent that I would give up. My family would visit in the afternoon after finishing work and some friends stopped by during the day if they had time. By all accounts, I’m sure they realized being cooped up in one place for so long can have negative effects on one’s thinking. Social distancing isn’t that bad. After 53 days doctors released me from the hospital with no more air leaking in my lung. During that time of “social distancing,” I learned a lot about people, but I mainly learned about myself. I read a lot of books on my tablet about self-improvement and remaining encouraged. I spent those 53 days pretty much alone but realized my need to rely on others to care for me. This experience taught me about triggers, humility, gratitude, and life priorities. I must continue to focus on those things. This COVID-19 situation can serve a positive purpose. I encourage people to use this time of social distancing and self-quarantine to their advantage. This is very serious. Use this time for personal growth and introspection. Many of us can come out of this as better people — maybe even healthier, physically and emotionally. During this quarantine, I’m building my skills and knowledge. As a video editor, I’m brushing up on my editing skills since I haven’t used them regularly since 2017. Maybe when all of this is over, employers will consider talented people who have the right skills but need to work from home. Last summer and fall I enrolled in two nutrition courses and one master herbalist course. I haven’t been following along these past few months, but now is the perfect time for me to get back into learning. I’ve always believed that nutrition plays a huge role in helping people live better with sarcoidosis. It has for me! Staying mentally strong and humbled during this time is key to survival. Usually, sarcoidosis life is like being in a bubble no one understands, but now more folks are understanding a little of what we go through. Maybe now people will be more empathetic of the situations we can’t control but have to live with. Wishful thinking. *** Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease. The post Social Distancing Could Be Good for More than Only Physical Health appeared first on Sarcoidosis News. Link naar het originele artikel
  10. It's now accepted that gut-barrier dysfunction and gut-derived chronic inflammation play a role in human aging, but how that process is regulated is still largely a mystery. A team led by Richard Hodin, MD, chief of the Division of General and Gastrointestinal Surgery at Massachusetts General Hospital (MGH) has uncovered an important piece of the puzzle which is described in the journal JCI Insight. Link naar het originele artikel
  11. Joachim

    Letting Go of ‘Should’ with Sarcoidosis

    I read a magazine article years ago shortly after my sarcoidosis diagnosis. It covered the topic of the “shoulds” in life. The article defined a “should” as an item such as good health, the ability to work a full-time job, having strong and supportive relationships, and being able to make plans and reach goals in life. Essentially, a should is anything we’ve been led to believe is automatically part of life. If we work hard, stay focused, and make good choices, additional goodies can be added to that list. Most people probably walk around with these expectations. While the shoulds might vary a bit from person to person, they typically include many of the same items. Yet, these very same things often cause us distress. This is especially true when living with a rare and chronic health condition. We’re not wrong for wanting certain things in life. Why wouldn’t we all want the best life has to offer? This is especially true in the age of social media, when comparing ourselves, our lives, and our accomplishments (or lack thereof) is almost a social norm. Yet, these comparisons can be quite detrimental to our personal contentment, quality of life, and peace of mind. Often, they can leave one feeling resentful, unhappy, and envious. However, once we lose these expectations — our ideas about life going a certain way and according to a specific plan — life becomes a little easier. This is especially true when dealing with disappointments and losses, like being diagnosed with a rare health condition in your prime, such as sarcoidosis. Changing expectations does not mean we have no expectations, that we have lost hope, or given up on life altogether. Instead, it’s just a realistic adjustment to circumstances, especially those out of our control. Adjusting to my situation is the only way I can make peace with the changes and losses I have been handed. Whatever life has handed you is challenging enough. In many cases, life is filled with hard knocks, disappointments, and unforeseen difficulties. But I choose not to make it more difficult for myself by falling for the shoulds. *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Letting Go of ‘Should’ with Sarcoidosis appeared first on Sarcoidosis News. Link naar het originele artikel
  12. After all of my efforts to remain germ-free I was reminded of a couple things this past week. The first is that hand soap and sanitizer don’t make me invincible. The second is that being homebound so much over the years while battling sarcoidosis has given me a “particular set of skills,” like actor Liam Neeson’s character Bryan Mills in the movie “Taken.” Now, my skills aren’t worth anything if any of my family members land in a sticky situation that requires a payoff to escape. Like the retired CIA agent told his daughter’s kidnappers in the movie, “I don’t have money.” But if anyone is being held hostage by boredom and looking for advice? Been there. Done that. I’ve got you. Another bug sneaks past my defenses Despite my recent focus on keeping my hands clean and sanitizing everything for my protection, something made it past my defenses. It started as a sore throat and headache and became a sinus infection, bringing misery and a lot of dull moments at home. I battled two bugs in recent months and was thankful this was just another encore, not something more serious as I had feared when I got sick. However, it was a wake-up call that I’m at risk of contracting something much worse every time I leave my home, even with all the precautions I’ve been taking. Out of bed, but not the house After clearing the stuck-in-bed stage, I usually land in the still-too-sick-to-venture-out stage, whether I’m battling sarcoidosis or another health issue such as a sinus infection. Boredom then becomes the enemy. This is when my particular set of skills, honed over many years, come into use. Window to the world There is a world of interesting things happening right outside the window. Just ask my younger brother, Antony, who was privy to my many breaking news reports while he cared for me during my stays in Florida. One time I frantically dragged him to the window when he returned home from work and pointed at the property behind his house, saying, “Those lazy cows have been sitting all day.” Believing cows only slept standing up, I thought this was an earth-shattering discovery. My brother, not so much. (Courtesy of Athena Merritt) Sports fix While stuck in bed fighting fatigue, which impacts most people with sarcoidosis, I became a football fanatic. That interest has brought many benefits, including filling dull moments. With professional sports currently on hiatus, my sports fix now comes from the NFL free agency. Multipronged approach to the doldrums The best way to beat the doldrums is by having a variety of interests and activities that can range from home projects to hobbies. I love books and puzzles, but sometimes illness, tiredness, or cognitive issues prevent me from focusing enough to enjoy them. During such times, music or even a TV binge can fill the void. If you are a Marvel fan like me, the postponed release of the “Black Widow” movie makes it a great time to marathon past movies. Although I have yet to explore it, the “LEGO Masters” television show made me wonder if I possess an innate talent for building plastic masterpieces. If you took up brewing beer or making wine as a hobby, the fruits of your labor could become a celebratory batch marking the end of shelter-in-place when it happens, or something to consume while you hole up inside waiting for the end. There is no shortage of hobbies or interests to explore. Whatever you choose to fill the time, try to make exercise and getting outdoors part of your routine. It not only helps to break up the day, but also can boost your mood. We are a vulnerable population. Please be safe and guard your health, even if it means staying home long-term. *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Ideas for Sarcoidosis Patients Who Are Self-isolating and Bored appeared first on Sarcoidosis News. Link naar het originele artikel
  13. Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based nonprofit she chairs will see the approval of 1,000 new rare disease therapies by 2027. That group, the International Rare Diseases Research Consortium (IRDiRC) — launched in 2011 by the European Union and the U.S. National Institutes of Health (NIH) — falls under the umbrella of the European Joint Programme on Rare Diseases (EJP RD). Italy’s Lucia Monaco chairs the International Rare Disease Research Consortium. (Photo courtesy of IRDiRC) The IRDiRC had planned to host 200 experts at a March 12–13 rare disease conference in Berlin. But, like every other medical event in Europe, that much-anticipated gathering was canceled in the wake of an explosion of infections and deaths across the 27-member EU. According to published reports at press time, EU member states account for just over 41% of COVID-19 infections worldwide. Reached by phone last week in Milan, the epicenter of Italy’s coronavirus outbreak, Monaco said she’s trying to remain optimistic. “Although the COVID-19 pandemic is going to slow down our progress, I hope this will not hinder it in a major way,” she told BioNews Services, which publishes this website. “This is such a time of uncertainty throughout the whole world,” Monaco said. “Of course, we’re worried about the sustainability of research activities. The economic disruption associated with coronavirus is a huge challenge, and nobody really knows how much it will hurt us. “Funding might be diverted,” she said. “And here in Italy, researchers must stay at home and can go to their labs only if there is some urgent necessity.” Ambitious 10-year goals Monaco took the helm of IRDiRC in January 2019 from Christopher Austin, MD, director of the NIH’s National Center for Advancing Translational Sciences (NCATS). Her three-year term ends Dec. 31, 2021. The consortium’s main goal is that, by 2027, anyone with a rare disease will receive an accurate diagnosis, optimal care, and available therapy within one year of coming to medical attention. Those whose disorder is not known in the medical literature will enter a globally coordinated diagnostic and research pipeline. EMA’s Amsterdam headquarters. (Photo by Larry Luxner) According to IRDiRC’s mission statement, no less than 1,000 new therapies for rare diseases will also win regulatory approval by 2027; most of them will focus on diseases without approved treatment options. Finally, within 10 years, methodologies will be developed to assess the impact of diagnoses and therapies on patients with rare diseases. “The initial goals when IRDiRC was launched in 2011 were to reach 200 new therapies by 2020, and to have most diseases diagnosed. We became aware in 2016 that the goal of 200 new therapies was being reached ahead of time,” she said. “That’s why in 2017 we decided to revisit our goals, which come from this revised analysis.” New therapies developed in the EU must be approved by the European Medicines Agency, which earlier this year inaugurated its new headquarters in Amsterdam, following the agency’s departure from London in the wake of Brexit. EJP RD, established in January 2019, operates on a five-year budget of €101 million (about $109.4 million) and involves at least 135 entities in 35 countries, including all EU member states except Cyprus. (We published a profile of its Paris-based coordinator, Daria Julkowska, PhD, in June.) Minimum $10 million commitment Monaco, who heads Italy’s Fondazione Telethon, has done extensive research on gene therapy as well as genetic disorders such as polycystic kidney disease. The IRDiRC has 62 member organizations and about 120 people engaged on a volunteer basis. Members include nonprofit foundations, government health ministries, pharmaceutical companies, and patient advocacy groups. Funders and companies must commit to invest a minimum $10 million in rare disease research and development over a five-year period. Patient advocacy groups must be umbrella organizations that represent multiple diseases over a wide geographic area. Members of IRDiRC include the National Organization for Rare Disorders (NORD), the Canadian Organization for Rare Disorders (CORD) and Geneva-based Rare Disease International, as well as new patient organizations from Africa and South America. “IRDiRC does not have a common pot of money to be shared among members, so there are no second agendas in participating,” Monaco said. “Everybody invests their money in their own strategic goals, but the added value of being part of IRDiRC is that what comes out of this consortium is knowledge that can be implemented locally.” She added, “That is the daunting challenge of rare diseases: the ones that are most rare are also the most neglected by research. Sometimes they’re not studied at all, so the opportunities to develop therapeutic approaches are very limited.” The post Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19 appeared first on Sarcoidosis News. Link naar het originele artikel
  14. This has been a rough week, to say the least. Last week, I lost one of my oldest aunts. She was my mother’s oldest sister and she meant a lot to me. She lived in Washington, D.C., and she let me live with her when I took a job there. Two days after her death, I lost my oldest uncle in Virginia. He was my aunt’s brother-in-law. When those two got together, the fireworks started. They were great people and their deaths have left multiple holes in our family. Then COVID-19 hit the scene Initially, I was somewhat in a panic. Having pulmonary sarcoidosis means I have severe lung issues and should remain indoors until this pandemic passes. I had two doctors’ appointments last week, one with my pulmonologist and the other with a gastroenterologist. Upon arriving at my pulmonologist’s office, I was handed a face mask and asked to wear it. I quickly noticed that everyone in the waiting area was wearing one. So much for feeling out of place. But I totally understood and was happy to oblige. The next day, I returned to the hospital for my second appointment. As soon as I entered the building, I saw that there weren’t a lot of people mulling around. The security guard was asking folks if they knew where they were going and was handing them face masks. When I arrived at my appointment, surprisingly, not one patient or staff member was wearing a mask. Once I finished my appointment, I asked the nurse for a mask and she gave me the rest from a box on the counter. I left feeling properly equipped to enter the real world. Remain calm and proceed The next few days were very stressful. Having serious lung issues, watching all the news coverage about voluntary quarantining and social distancing brought back memories of the two months I spent in the hospital during summer 2017. Spending an excessive amount of time alone can affect a person’s mental health, especially when it seems as if there’s no answer in sight. I started getting our household in order. My mother-in-law and I went to a few supermarkets. We wanted to make sure each of our households had plenty of groceries and staples in the event we were housebound for more than the recommended 15 days. We even made sure we had enough “adult” beverages on hand to enjoy while quarantined. My mother-in-law is like my personal bodyguard. I usually take her shopping with me because she makes sure people stay away from me when I’m wearing my oxygen. Control the situation before it controls you This past Sunday, my wife and I shopped for a few more needed items that were on sale. When we arrived at the market, I put on my oxygen, plastic gloves, and a face mask from my doctor’s appointment. Inside the store, some people looked at me oddly. Truth be told, wearing all of this ensures me peace of mind because no one dares come near me — social distancing at its best. Surprisingly, the other shoppers were very pleasant considering we’re in the middle of a health crisis. I even saw one employee wearing a mask and plastic gloves like me. She was exercising social distance, too! We got our groceries and made our way home, laughing at my social distancing skills. Later that evening, my family and I discussed my health concerns in relation to the global health crisis. I asked them to limit their time out of the house, especially if they’re around other people, because that could have a negative effect on me. I also suggested we periodically disconnect ourselves from the news and social media because of the amount of information being shared. Too much is never a good thing, especially information with a lot of mixed messages. Having a chronic health condition is serious. You always have to be on top of both your physical and mental health because a crisis like this can escalate your stress level. During this time, your mental health plays a huge part in your ability to physically adjust to this “new” and hopefully short normal. Remember, you’re not alone. There’s safety in numbers and we all have to stick together, figuratively. Charlton Harris suits up for an outing. (Photo by Charlton Harris) *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are The post Managing Sarcoidosis and Mental Health During the COVID-19 Crisis appeared first on Sarcoidosis News. Link naar het originele artikel
  15. If you have asthma, you are among those at greatest risk in the coronavirus pandemic and must take precautions, the American College of Allergy, Asthma and Immunology (ACAAI) says. Link naar het originele artikel
  16. bianc

    COVID-19 en Sarcoidose (coronavirus)

    Dank voor je in info joachim. Ik maak me grote zorgen en ben gelukkig in een positie die mij toestaat sociale contacten te mijden. Hoera voor het tuinseizoen!!! Wat is wijsheid? Ik heb overwogen te stoppen met immuunsysteemremmers, maar het is nou eenmaal niet zo dat als je stopt ( gefaseerd) dat je immuunsysteem weer direct actief is. Ik ga het zeker aankaarten bij de specialist klinische immunologie , dwz als de afspraak niet gecancelled word. Ik zou er de 27e maart naar toe moeten. Voor de mensen met dringende vragen waarvan de afspraak nog ver weg is, ben ik bereid jullie vragen mee te nemen. Let wel, het is geen longspecialist. Nogmaals dank dat je de moeite hebt genomen info op het forum te zetten.
  17. Joachim

    A protein that controls inflammation

    A study by the research team of Prof. Geert van Loo (VIB-UGent Center for Inflammation Research) has unraveled a critical molecular mechanism behind autoimmune and inflammatory diseases such as rheumatoid arthritis, Crohn's disease, and psoriasis. They discovered how the protein A20 prevents inflammation and autoimmunity, not through its enzymatic activities as has been proposed, but through a non-enzymatic mechanism. These findings open up new possibilities for the treatment of inflammatory diseases. The results of the study are published in the leading journal Nature Immunology. Link naar het originele artikel
  18. More than 90 percent of us with sarcoidosis have lung involvement, which makes it hard for me not to worry about the recent coronavirus outbreak. Last week, the coronavirus that causes the COVID-19 illness was declared a global pandemic by the World Health Organization. We are being bombarded daily with reports of new infections and efforts to prevent its spread. All of which has left me feeling the same way I do after a record snowfall — with a strong desire to call out of work and hole up at home. Balancing concerns with fear It’s no wonder I feel that way. In the past week, a travel ban was instituted, the NBA, NHL, and MLS all suspended their seasons, and the NCAA canceled March Madness tournaments. Social distancing also became the new norm as well as bans on large public gatherings. Sporting events took place without fans in attendance and television talk and game shows aired without live audiences. For now, I’m squashing the temptation to panic as I continue to rely on hand soap and sanitizer to protect myself just as my doctors have advised. Keep calm and wash your hands News of COVID-19 drew my attention due to my pulmonary sarcoidosis diagnosis. I contacted my former pulmonologist, Daniel Culver, to ask for his opinion on the risks. “The risk from a virus like this falls most heavily on the elderly and those with severe underlying organ damage, such as chronic lung disease with scarring, heart failure, poor liver function etc.,” Dr Culver, who is director of the Interstitial Lung Disease Program at the Cleveland Clinic, explained in an email to me earlier this month. “I think that, for most individuals, this will manifest as a viral syndrome, annoying but not life-threatening. That does not mean it should not be taken seriously but also implies that the case fatality rate and the risks to most individuals are not remarkably high.” When coronavirus cases began emerging closer to home, I reached out to my physicians to discuss my increased risk of infection at my part-time job and how to best protect myself. Doing so not only gave me peace of mind but kept me from panicking and taking unnecessary measures, such as wearing gloves or masks out of fear. I strongly urge others with concerns to do the same. Your health status and risks differ from mine, and your doctor is best placed to advise you on preventive action. The cost of panic Going through life with sarcoidosis can be a struggle at times, but I try not to worry or fear the worst. At every turn, I’m reminded of the cost of panic: lives driven by fear instead of reason. It’s healthy people walking around with masks, which don’t protect them from infection but create a critical shortage for those most in need of them. It’s store shelves empty of products such as hand sanitizer, disinfectant wipes, bottled water, toilet paper, paper towels, over-the-counter medication, and food. This is happening despite it being drilled home over and over that most people will experience only mild symptoms from the coronavirus. Living cautiously, not fearfully I believe the situation will get a lot worse before it gets better. In the past week, I’ve received emails from airlines, retail stores, hotels, banking institutions, and even a storage facility assuring me that they are taking safety measures amid the outbreak. Organizations such as Medicare, the Centers for Disease Control and Prevention, and the Foundation for Sarcoidosis Research have posted information and prevention tips online. My recent digital detox helped me end my love affair with my cellphone, which is a magnet for germs. But I still could get the coronavirus even with the measures I am taking. If things continue to get worse, I may have to make additional changes to how I live my life. But for now, I’ll follow the advice of my physicians, wash my hands, and hope for the best. *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Choosing Caution Over Fear Amid the Coronavirus Panic appeared first on Sarcoidosis News. Link naar het originele artikel
  19. Inflammation in the brain may be more widely implicated in dementias than was previously thought, suggests new research from the University of Cambridge. The researchers say it offers hope for potential new treatments for several types of dementia. Link naar het originele artikel
  20. Boehringer Ingelheim‘s Ofev (nintedanib) has been approved in the U.S. as the first treatment for chronic fibrosing interstitial lung diseases (ILDs) with a progressive phenotype. This approval by the United States Food and Drug Administration (FDA) includes sarcoidosis, autoimmune ILDs, unclassifiable ILDs, chronic hypersensitivity pneumonitis, myositis, Sjogren’s syndrome, coal worker’s pneumoconiosis, and some forms of interstitial pneumonia. All these conditions commonly involve fibrosis (scarring) in the lungs. “Today’s approval marks a major advancement in ILD research, and is an important milestone just six months after the approval of Ofev to slow the rate of decline in pulmonary function in patients with SSc-ILD,” Thomas Seck, MD, senior vice president of medicine and regulatory affairs at Boehringer Ingelheim, said in a press release. Ofev is an inhibitor of tyrosine kinase, and works by inhibiting a number of molecular pathways involved in the formation of scarring. It received breakthrough therapy designation from the FDA in 2019 for the treatment of ILDs. Ofev was first approved to treat idiopathic pulmonary fibrosis in 2014, and ILD associated with systemic sclerosis in 2019. This new approval makes Ofev available for individuals with ILDs with worsening lung fibrosis over time (progressive phenotype). “This approval provides a therapeutic option for many patients who did not have an approved treatment until today,” said Kevin Flaherty, MD, University of Michigan professor and lead investigator of the INBUILD clinical trial (NCT02999178). The FDA decision was based on positive data from this Boehringer Ingelheim-funded Phase 3 trial, in which 663 participants with progressive ILDs were treated with Ofev (150 mg twice daily) or given a placebo. Results showed that Ofev treatment significantly slowed the decline in lung function, as measured by forced vital capacity — the average annual rate of decrease was 80.8 ml per year with Ofev, compared to 187.8 ml per year with a placebo, which corresponds to a difference of 107 ml per year and a reduction in loss of lung function by 57%. Ofev’s safety profile in the trial was consistent with that reported in previous studies. The treatment’s most common adverse side effects included diarrhea, followed by nausea, vomiting, abdominal pain, decreased appetite, weight loss, elevated levels of liver enzymes, headache, and hypertension (high blood pressure). “Patients with a progressive form of chronic fibrosing ILDs may have symptoms that are similar to other respiratory illnesses, and that may delay getting an accurate diagnosis for patients,” said Greg Cosgrove, MD, chief medical officer of the Pulmonary Fibrosis Foundation. “The new indication for nintedanib provides a therapeutic option for physicians and their patients as there is now a treatment option that can help slow the decline in lung function.” According to Boehringer, 18% to 32% of patients with ILDs develop chronic fibrosing disease with a progressive phenotype. The company has a support program for patients prescribed Ofev called OPEN DOORS. The post FDA Approves Ofev for Sarcoidosis and Other Interstitial Lung Diseases appeared first on Sarcoidosis News. Link naar het originele artikel
  21. Theo56

    Voorstellen Theo

    Mijn naam is Theo. Ik ben 63, en woon met vrouw, dochter en kleindochter in de Achterhoek. Ik werk in de IT, de laatse 20 jaar bij dezelfde werkgever, en hoop over 2,5 jaar met pensioen te gaan. Ik las op dit forum veel ervaringen van lotgenoten. Opmerkelijk hoeveel mensen hier hun verhaal delen, hoe verschillend de verhalen zijn, maar ook hoeveel overeenkomsten er zijn. Na enige aarzeling (wat kan een ander ermee?) heb ik besloten ook een bijdrage te leveren. Even een klein stukje terug in de tijd. Zo’n 10 jaar terug ben ik weleens met wat onduidelijke kortademigheids-klachten bij de huisarts geweest. Diverse onderzoeken van hart, longen, allergie etc. leverden niets op. Verder had ik wel klachten van gewrichten, met name de heupen, maar daar kwam ook weinig uit. In de loop der tijd viel me wel op dat ik na een gewone verkoudheid nog weken lang met een kriebelhoest rondliep. Er was verder goed mee te leven, dus ik heb er niet al te veel aandacht meer aan besteed. In het najaar van 2017 bleek ik plotseling vocht achter een van de longen te hebben. Via de huisarts kwam ik bij de longarts terecht, die gelijk een scan liet maken en wat longvocht afnam. Verdenkingen van een kwaadaardige aandoeningen bleken gelukkig niet terecht, maar wel was duidelijk dat de lymfeklieren tussen de longen behoorlijk vergroot waren. Er werd 1,5 liter vocht weggehaald, en Prednisolon voorgeschreven. 2 Weken later opnieuw 1,5 liter vocht weggehaald. Er werden biopten genomen van de lymfeklieren via de slokdarm, die geen eenduidig beeld gaven. Er werd wel een samenklontering van cellen aangetroffen, maar het werd niet helemaal duidelijk wat de samenstelling was. Na een aanvullende PET CT scan een waarschijnlijkheidsdiagnose: Sarcoidose. Overigens buitengewoon veel waardering voor alle betrokken artsen, longartsen, reumatoloog, oogarts, radilogen en anderen die me steeds serieus namen, en alles uit de kast haalden om tot een diagnose te komen. Ook zeer onder de indruk van de vele medische technieken die beschikbaar zijn om met een minimale belasting van de patient bij te dragen aan inzicht en herstel. Inmiddels sloeg de Prednisolon goed aan, en verdroeg ik het goed. Zoals bekend zijn de bijwerken op lange termijn niet echt prettig, maar bij normale afbouw kwamen klachten als vermoeidheid, benauwheid en gewrichtspijn snel terug. Na 1 jaar op 20 mg/dag een zachte landing ingezet. Door in hele kleine stapjes af te bouwen gebouwd, was ik zo’n 5 maanden later toch van de pillen af. Longvocht is nooit meer teruggekomen, maar de vermoeidheid, concentratieproblemen en pijn in gewrichten, vooral heupen en knieën, maar ook schouders en handen, werd steeds erger. Grootste belemmering naast de vermoeidheid is nu de pijn in pezen en kapsels bij het lopen. Ik heb het meeste baat bij Dicofenac om de pijn te onderdrukken. Ik prijs me wel gelukkig dat ik in rust geen pijn heb. Van andere sarcoidose patienten lees ik dat sommigen altijd pijn hebben, dat moet echt heel naar zijn. Voor mij nog een lichtpuntje: ik krijg alle begrip en medewerling van mijn werkgever bij het omgaan met vermoeiheid en beperking/aanpassing van werktijden. Ook dat gaat wel eens anders bij lotgenoten begrijp ik. In oktober 2019 is opnieuw een PET-CT scan gemaakt. Het beeld is sinds 2 jaar eerder onveranderd. De lymfeklieren tussen de longen zijn iets toegeomen qua aktiviteit, en laten een mooi verlichte kerstboom op het beeldscherm zien. Ook ontstekingen in de gewrichten lichten op. Verder een verdenking van betrokkenheid van de hypofyse. Inmiddels door mijn behandelend longarts doorverwezen naar het ILD team in Nieuwegein. Is dat niet mooi: een longarts die in overleg met zijn team aangeeft dat hier hun grenzen qua kennis bereikt zijn, en zelf in overleg met mij escaleert naar een expertisecentrum. Chapeau! Behandeling met Plaquenil (chloroquine) volgt, maar hiermee 4 maanden later i.o.m. de longarts weer gestopt omdat er geen verbetering merkbaar is er er wel wat bijwerkingen zijn. Op grond van breed aanvullend onderzoek door het ILD, waaronder 22 buisjes bloed (waarvan 5 voor wetenschappelijk onderzoek) was voor mij een nieuw record..., werd de diagnose ‘sarcoidose’ bevestigd. Ergens voelt dat toch prettig om daar duidelijkheid over te hebben. Vervolgonderzoek van de hypofyse wordt nu ingezet, en MTX voorgeschreven, Hiermee mag ik overigens pas beginnen als over een week of 4 hopelijk het Corona-virus over zijn piek is. Een heel verhaal... Ik ben benieuwd of er anderen zijn die zich hierin herkennen. Met name wat betreft onwikkeling van gewrichtsklachten, en mogelijk van de hypofyse. Maar ook de positieve ervaringen in de medische wereld en met mijn werkgever. Hartelijke groet, Theo
  22. Take a minute to think about what’s really important in your life. I find myself doing that more often than I used to. I often think about the things that mean the most to me like family, health, physical abilities, and friendships, but health and family are the most meaningful to me. That’s not to say that other things aren’t important, it’s just that I’ve narrowed my list. Through the years I’ve always been extremely health conscious, and I’ve channeled that interest to my wife, my kids, and even other family and friends. I’ve enrolled in two online nutrition courses. I love the courses and I share the information I learn with my family and friends. And I’ve also learned how my passion for food and nutrition has benefited my health. Time to get away Last weekend, I had an opportunity to hang out with my son, and it quickly became a pleasant experience. Every few weeks, I take a trip about 40 minutes outside of Philly to Kennett Square, Pennsylvania, to visit my brother-in-law. Before this particular trip, my son asked if he could come hang out with the old guys. I told him it wouldn’t be an exciting trip, just me hanging out with my brother-in-law cooking, drinking beers, laughing, and “slumming” like college students on a Saturday afternoon. I told him I enjoy getting away from the hustle and bustle of the city and having time to recharge and concentrate on improving my physical and mental health. We headed out on Friday and stayed until Monday. We had a blast. We weren’t on any time schedule, and no one asked us to do anything we didn’t want to do or interrupted our relaxation space. We enjoyed cocktails, we cooked, we ventured out to a farmers market (my guilty pleasure), and we listened to some Miles Davis, Roy Ayers, and old Richard Pryor comedy CDs. It reminded me of growing up with the adult men in my family, and now I was experiencing that with my son. Priceless. Back to reality We arrived back in Philly on Monday. My wife had scheduled contractors to come out to our house to do some work, so I had to put on my “husband hat” to deal with it. Surprisingly, all went well, and I had no complaints. When she arrived home she was pleased, too, and that’s all that matters anyway. On Tuesday, I received a phone call from my cousin in Washington, D.C., telling me that his mom passed away. I’ve always been very close to my aunt, who was my mother’s oldest sister. When I moved to Washington for work, I stayed with her for a few months before I got an apartment. We remained close even after I left the area. I made a few trips with my family to visit her over the years. We stayed with her and reminisced about the time I lived with her. My aunt had been slowly declining in health since 2017. When I had my first spontaneous pneumothorax, we talked almost every day. Coincidently, when I was in the hospital, she had been admitted too after a lung cancer diagnosis. After we had both returned home to recuperate, we would call each other every Sunday afternoon for “welfare” checks. We would talk while I cooked dinner. Her dinner already would be done, and she would tell me what she’d cooked before telling me how to cook mine. Our relationship became closer over the past three years. She got a kick out of my teasing her about being her favorite nephew. Last December, my son and I traveled with my mother’s youngest sister and her husband to Washington to visit my aunt. Although she was frail, she was in good spirits, especially when she saw her favorite nephew and his son. We stayed a few hours, took some pictures, and left. It was a bittersweet visit. A support system makes a big difference to your health, especially when you have challenges. In one weekend, I lost an aunt who had supported me over the years and grew closer to my son. When people appreciate you it makes all the difference. Each day I’m learning more about not taking anything or anyone for granted. Appreciate the little things because they mean more than you know. Rest in Peace, Ro! *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Sarcoidosis Can Be a Lonely Adventure, but It Doesn’t Have to Be appeared first on Sarcoidosis News. Link naar het originele artikel
  23. University of Wisconsin-Madison researchers have identified a new way that common Aspergillus molds can induce asthma, by first attacking the protective tissue barrier deep in the lungs. Link naar het originele artikel
  24. Joachim

    Good Intentions Gone Awry with Sarcoidosis

    I began the year with good intentions. I simply wanted to invite more fun and less stress into my life. The first sign that my intentions for 2020 were going awry occurred on a work-related road trip with my husband. I awoke the first morning away with a pounding headache, an excruciating sore throat, and a fever. This felt like the start of a setback similar to the one I experienced in the fall. Fortunately, I didn’t have a cough. Despite my well-planned packing, I didn’t have anything to relieve my sore throat. I took a few pain relievers and spent most of the day attempting to get some sleep. Sleep finally came to me after dinner that night. We decided to leave the next morning, a few days early, because of how horrible I was feeling. It was disappointing, to say the least. It felt as though my health had won, once again. I slept for several days upon our return home. Whatever I came down with really knocked me out. In addition, it aggravated my sarcoidosis symptoms, especially the pain and fatigue. Luckily, the snowstorm that hit our area a few days later didn’t leave much of an accumulation of snow. It was light, powdery, and cleaned up easily enough. I thought the snowfall looked pretty and planned to take some pictures the following day as I was beginning to feel better. However, the next morning we awoke to a vehicle collision in the alley adjacent to our house in our sleepy little town. During this unfortunate mishap a car crashed into the side of our home. Evidently, my good intentions weren’t the only things going amiss. My photography plans were out the window as we called police, insurance inspectors, and contractors to survey the damage. I was feeling baffled by the confusion. By the next day, I was in bed with a migraine headache until midafternoon. I mentioned in a recent column how living with a rare health condition has made me strong. But suddenly, I was feeling helpless. I try not to complain about the hand I’ve been dealt in life as it pertains to my health. At the same time, I recognize that stress aggravates my immune system. Yet, though I try to avoid stress, it always seems to find me. It is a lose-lose situation for someone with a chronic health condition. Taking a step back, I’m thankful no one was injured in the accident. Although we’re still waiting to hear the extent of the damage to our home, we’re optimistic it can be repaired. Additionally, I am on the mend from my health setback. I could have used some fun to come knocking at my front door that morning. Here’s hoping there’s some in store this month, as I attempt to get back on track with my good intentions for 2020. *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Good Intentions Gone Awry with Sarcoidosis appeared first on Sarcoidosis News. Link naar het originele artikel
  25. Joachim

    When Restful Sleep Is Elusive, Here’s What I Do

    Whenever I see my friend Laurie’s cats or my niece Nautica’s dog sleeping I think, “I wish I could sleep like that.” Their pets can drop into a blissful snooze anywhere and under any circumstances and look so comfortable. That’s a state I yearn to achieve nightly in my quest for a good night’s rest, which is vital in battling sarcoidosis. Cat napping bliss. (Photo by Laurie Mason) Sleep isn’t just important for us Sarcoidosis warriors. Everyone needs to make getting enough shut-eye a priority for their health, a message the National Sleep Foundation hopes to drive home during their Sleep Awareness Week campaign running from March 8 to 14. Feline fatigue begone. (Photo by Laurie Mason) No rest for the weary Fatigue and excessive daytime sleepiness, which are two different symptoms, are common in sarcoidosis. Excessive daytime sleepiness strikes those of us with sarcoidosis about twice as frequently as the general population, according to research. Between 50 and 85 percent of us with sarcoidosis battle fatigue, according to the study, “Fatigue and Excessive Daytime Sleepiness in Sarcoidosis: Prevalence, Predictors, and Relationships between the Two Symptoms,” published in the journal Respiration. The study, conducted in Germany, found that 16.5 percent of sarcoidosis patients who were surveyed said they experience excessive daytime sleepiness, while 16.4 percent said they have severe fatigue, and 6.3 percent have both symptoms. I’m among those battling both fatigue and excessive daytime sleepiness — diagnosed with sleep studies — that on the worst days can turn me into a walking zombie. Although no amount of sleep (or even caffeine or medication) can banish my tiredness on many days, I know that not getting the recommended 7-8 hours each night certainly doesn’t help my sarcoidosis symptoms. Catching zzzs One of my top challenges to a restful night is chronic pain, which is common among those of us with sarcoidosis, even with the use of pain medication, according to a survey in 2017. I’m hardly alone in my misery. In 2016, an estimated 50 million American adults had chronic pain, and nearly 20 million had high-impact chronic pain, according to the Centers for Disease Control and Prevention. For those of us battling pain, the odds are stacked against us when it comes to getting a good night’s slumber. Sixty-five percent of Americans with no pain reported good or very good sleep quality, compared with just 45 percent with acute pain and 37 percent with chronic pain, according to the National Sleep Foundation. Other factors (sometimes self-inflicted) also impact my ability to catch a blissful 7-8 hours of zzzs each night, such as noise, stress, a wandering mind, and using electronics too close to bedtime. 40 winks to better health Research has shown that not getting enough sleep can affect everything from your heart to your eating habits, which can increase cardiovascular disease risk. I’ve noticed firsthand I tend to reach for more junk food when I lack sleep, derailing my efforts to eat healthily. Daytime sleepiness in older adults could signal trouble, according to a Stanford University study. The research found that those who reported excessive sleepiness during the day had double the risk of cancer, diabetes, and high blood pressure, and were 2.5 times more likely to develop heart disease. For me, a few small changes helped to improve my nightly siesta efforts. I avoid electronics late in the evening, turn the thermostat down to 62 degrees, and eat a small snack an hour before bedtime, which helps signal to my brain that it’s time to catch some zzzs. I also made my bedroom a place for sleeping — not reading, using my laptop, or watching television. Sticking to a sleep schedule, limiting daytime naps, watching what you eat and drink, and regular physical activity are among the tips offered by the Mayo Clinic for better sleep. Do you have difficulty getting a restful night’s sleep? Please share in the comments below. *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis. The post When Restful Sleep Is Elusive, Here’s What I Do appeared first on Sarcoidosis News. Link naar het originele artikel
  26. The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still lacking treatment. And federal incentives to boost treatment development for these rare diseases have primarily focused not on creating new therapeutics, but rather on expanding the use of existing ones, the data also showed. The study, titled “Pediatric Orphan Drug Indications: 2010–2018,” was published in the journal Pediatrics. Children comprise half of the people affected by rare diseases, which are defined as those affecting less than 200,000 Americans. While the investment in the development of treatments for children with rare disorders is crucial, the rarity of the diseases makes them less attractive for pharmaceuticals. To motivate investment by pharmaceutical companies in the development of therapies for rare diseases — called orphan drugs — several federal incentives have been developed over the years. These include tax exemptions, grants for accelerating and testing potential therapies, and an exclusivity period of seven years to enhance marketing. During that time, competitors are precluded from marketing an alternative version of the therapy for the same disease. Now, the researchers identified 402 orphan drugs approved by the U.S. Food and Drug Administration (FDA) between 2010 and 2018. Noting that “data are lacking on the number, nature, and benefits of recently approved pediatric orphan indications,” the team conducted an analysis. The results showed that a third of the 402 treatments — 136, corresponding to 33.8% — were specifically for children (pediatric indications), and targeted 87 unique diseases in all. A total of 21 diseases were targeted by more than one therapy. One of the most frequently targeted rare diseases among children was cystic fibrosis, with 12 pediatric orphan indications, along with acute lymphoblastic leukemia, which also could be treated with 12 approved orphan drugs. Another common rare disease target among children was the immune disorder hereditary angioedema, characterized by swelling under the skin, with six pediatric orphan indications. Of the 136 approved pediatric orphan drug applications, the majority were for existing therapies — some decades old. Some of the therapies were approved for treating common diseases. In all, 45 (33.1%) were existing treatments approved for at least one common disease that were repurposed, and 31 (22.8%) were existing therapies approved only to treat rare diseases. In contrast, 60 (44.1%) of the approved pediatric therapies were for new drugs. “Our study reveals reason for optimism and reason for concern,” Kao-Ping Chua, MD, PhD, a pediatrician and researcher at Michigan Medicine C.S. Mott Children’s Hospital, and the study’s lead author, said in a press release. “Many pediatric orphan indications may have represented breakthroughs for children with rare diseases. At the same time, most indications were not for new drugs, and some represented relatively minor expansions of use,” Chua said. “Orphan drugs are costly to society, and it’s important to make sure that these costs are justified by the amount of benefit to patients,” he added. According to the team, “the diseases targeted by the 136 pediatric orphan indications were most commonly categorized as genetic and/or metabolic (16.9%), hematologic (16.9%), immunologic and/or rheumatologic (12.5%), and cancer (11.8%).” Among 97 treatments eligible for the FDA’s breakthrough therapy designation — intended to accelerate the development and review of a potential therapy for a serious or life-threatening disease, with clinical evidence of substantial improvement over existing options — 20 (20.6%) received the designation. “Although the Orphan Drug Act has been effective in incentivizing drug development, our findings suggest that not all pediatric orphan indications hold the same value,” said Lauren Kimmel, a research assistant at the University of Michigan Medical School and Child Health Evaluation and Research Center (CHEAR), and the study’s first author. “Policymakers should ensure that resources are being used efficiently and effectively to stimulate development of new therapies for rare diseases that don’t have any treatment options,” Kimmel concluded. The post Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds appeared first on Sarcoidosis News. Link naar het originele artikel
  27. My daughter always reminds me that I’m just “Dad.” At 20 years old, she believes she knows the ways of the world. No matter what advice she asks for, she always does the opposite of what I suggest and wonders why things don’t work out to her expectations. Maybe it’s a Dad thing between fathers and daughters. Frankly, she reminds me a lot of myself. Determined best describes our personalities. She turned 20 last November and was convinced that she was “grown.” She has a habit of casually mentioning things she wants to do, and honestly, because her ideas change so much, some of what she says goes in one ear and out the other. One thing she is intent on doing is travel. That’s something I want both of my kids to do. We take family trips together, but not as many as I’d like because of my health issues. Pulmonary sarcoidosis tends to slow you down, but so far, knock on wood, it hasn’t stopped me from doing most of the things I enjoy. For my daughter’s birthday, my wife, my daughter, and one of my daughter’s girlfriends took a trip to Los Angeles. I’ve been to San Jose for business and really liked it, so I figured she would enjoy a few days on the West Coast. She did, but like me, the novelty of being there quickly wore off. And like me, she can at least say, “Been there, done that.” Over the past two weeks, she kept saying that she’s taking a trip. Again, like most young people, she changes on a dime. In one ear and out the other, especially since I had spent a few days in the hospital. But all along, she’d been telling my wife about her plans during their short travel junket to LA. Like most dads, I’m left out of the loop until I’m needed. I’m not sure if I was more surprised or upset that she booked a trip to Puerto Rico without sharing her plans with me. For the most part, I do a lot of the planning when we travel as a family. I like to have everything in order before we leave on our trips, thereby avoiding unexpected changes. I decided not to get involved unless I needed to. It wasn’t my trip, so I had to give her the freedom to do things her way. Admittedly, as her dad, it was hard for me to let her do this by herself without my intervention, but she’s becoming more independent and I have to give her the freedom to grow. As anyone with health issues can attest to, unconsciously, we tend to hold onto people a little more than others do. In the past few years, I’ve come to hold my wife and kids a little more closely to me, not because I rely on them for a lot, but because it makes me comfortable having them close by. I realize that it’s not a bad thing, as long as I give my kids the freedom to become the people my wife and I envision them to be. My daughter is on her way back home from her trip. I’m contemplating whether I should tell her that I missed her, mainly because the house has been quiet. She likes to keep the pot stirred like me, and there’s never a dull moment in our home. Growing up, my mother used to tell my brother and me to “get off of the block,” which means to get out of the neighborhood and explore and experience different things. I’ve done my fair share of traveling, both nationally and internationally, mostly for business. But I was able to have fun in the places I visited. I envisioned our family traveling to places off the beaten path, but my use of oxygen makes that a little challenging. However, it doesn’t negate the idea. With my health still good, I need to make more of an effort to make that plan a reality instead of hearing the “what-ifs” echoing in the back of my mind concerning my health issues. Whether I have the opportunity to travel like I used to or not, it’s cool. At least I know my kids have the desire to “get off of the block” and experience life. Our health issues don’t define us. Our desire to live is what defines us no matter the circumstance. *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis. The post A Surprise Trip Made Me Realize My Daughter’s Growing Up appeared first on Sarcoidosis News. Link naar het originele artikel
  28. Joachim

    Social isolation can cause physical inflammation

    Social isolation could be associated with increased inflammation in the body, new research from the University of Surrey and Brunel University London has found. Link naar het originele artikel
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