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  1. Gisteren
  2. Magje

    Voorstellen Theo

    Hi Theo, Welkom op het forum en bedankt voor het doen van je verhaal. Zelf heb ik alleen af en toe last van mijn gewrichten, meestal trekt dat na een slechte periode wel weer bij. Over de hypofyse kan ik helaas niks zinnigs zeggen. Is er al nieuws onderhand? Of hebben de onderzoeken nog niet plaatsgevonden? En de MTX, slik je die onderhand al? Ik ben zelf van ziekenhuis geswitched, de longartsen in mijn vorige ziekenhuis zeiden dat ze sarcoidose ook konden behandelen, maar achteraf bleek dat ze best wat dingen verkeerd hadden gedaan. (Ik woon in Rotterdam en daar zit ook het EMC dat een specialistisch centrum heeft en dat was nog dichter bij huis ook.) Superfijn dat je werkgever zo begripvol is! Ik begin dinsdag met een nieuwe baan; mijn oude werkgever was ook top. Als ik vermoeid of ziek was werkte ik veel vanuit thuis om te compenseren.
  3. Laatste week
  4. Joachim

    My Love Affair with Meat Hits a Rocky Patch

    Sometimes in relationships flaws become too glaring to ignore, which either leads to compromise or goodbye. That is now the case in my long love affair with meat. I’ve made sacrifices over the years. My dates with the bad boys (red meat) aren’t nearly as frequent now. (Photo by Athena Merritt) I’ve often given the cold shoulder to processed paramours like deli meat and sausage. But I’ve always wined and dined poultry and seafood to my heart’s content. That, too, may soon change. A lot of bothersome behavior has tugged at my heart recently, which has me considering separation. Meat, once at my beck and call, is now hard to track down. And our dates aren’t as cheap as they used to be with meat, poultry, fish, and eggs leading grocery store price hikes, as USA Today reported. Meat is also hanging in some risky places before it gets to me, with COVID-19 widespread in processing plants across the U.S. There are also factory farms, which some studies warn are potential breeding grounds for future pandemics. It’s not the first time I’ve considered walking away. Vegetarianism crossed my mind a lot last summer. My friend Laurie and I discussed it over dinner before attending a concert featuring Rob Zombie, who made the leap in 1982, according to the animal rights group PETA. Laurie dumped meat that night and never returned. I vowed to do the same once it vanished from my fridge and freezer, but temptation got the best of me, and when it was gone I went back for more. But things have changed. It’s becoming harder to continue justifying my ongoing relationship with meat. The pandemic has led me to consider what is essential in my life. Getting meat to my plate not only puts workers lives at risk, but also my own. Cutting back or eliminating meat entirely from diets brings many health benefits, including reducing the risk of heart disease, stroke, high blood pressure, high cholesterol, type 2 diabetes, obesity, and many cancers, according to the American Heart Association. I hope sending meat packing will get rid of my ongoing fatigue and chronic pain, too. Or at least give me a fighting chance with it on most days. Breakups are difficult. Jumping ship from meat to veggies too abruptly can cause headaches and gastrointestinal unrest, and even affect mood, which is why I’ve been taking it slowly. In the past, my leaving has been an empty threat, but there are plenty of alternatives vying for my attention now. The only thing I have left to say to meat is, “It’s not you, it’s me. I’ve changed.” *** Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear. Blowing off steam: Being cooped up can be boring. Several popular actresses and stuntwomen lashed out for us in a quarantine fight challenge. In the video, put together by stuntwoman Zoë Bell, participants are filmed pretending to punch or kick someone and then the video picks up with another participant pretending to be on the receiving end of the attack. Bell (who was Uma Thurman’s double in “Kill Bill”), Halle Berry, Rosario Dawson, Scarlett Johansson, Zoe Saldana, and Cameron Diaz are among the many cameos. Call for kindness: “Schitt’s Creek” actor Dan Levy recently posted a message on Instagram aimed at those not wearing face masks. “Imagine seeing it not as an infringement on your freedom, but rather the simplest, easiest act of kindness that you can do in a day. Not just for yourself, but for other people who might have autoimmune issues.” Click here to view the message in its entirety. Quarantine options expand: Being safe doesn’t mean being stuck inside if you are in New Jersey. Six Flags Great Adventure & Safari amusement park will open a drive-thru safari on May 30. AC Jokes held its first drive-in comedy show in Atlantic City this month and more are scheduled. *** 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 My Love Affair with Meat Hits a Rocky Patch appeared first on Sarcoidosis News. Link naar het originele artikel
  5. Magje

    Aanhoudende verhoging en vermoeidheid

    Hi, Ik hoop dat het met iedereen goed gaat in deze rare tijd. Ik was benieuwd of jullie ook bekend zijn met aanhoudende verhoging (37.5 - 38.2 C.).Begint bij mij ergens in de voormiddag tot de avond. Sinds half maart bij mij (bijna) vaste prik samen met erge vermoeidheid en recentelijk pijn onder mijn linker rib (dat laatste is al een keer onderzocht; konden niks vinden). Ik zit op 5 mg prednison + 15 mg MTX. Volgens de longarts hoort de verhoging niet bij sarcoidose (ik zit in het Erasmus), maar ik heb het vorig jaar ook al een periode gehad (toen duurde het maar een maand). A.s. donderdag weer controle, maar de vorige keer was de longfunctie en bloed prima, dus grote kans dat ze niks kunnen vinden. Dokter wil ook niet verder zoeken. Ik vind het best wel frustrerend. Stel dat het nou bij de ziekte hoort (ook al is deze niet actief) dan kan ik me erbij neerleggen, maar nu ga ik toch de hele tijd denken; wat heb ik nou? Begin a.s. dinsdag ook met een nieuwe baan; gelukkig de eerste maanden nog thuis werken, maar toch...
  6. Joachim

    Inflammation: part hero, part villain

    For many years, inflammation was considered one of medicine's chief enemies. Experts viewed it as a side effect of illness and injury, a negative byproduct of the body's efforts to heal. One managed and banished it whenever possible. Link naar het originele artikel
  7. European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 online medical conference. The session was part of the 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — which was to have occurred in Stockholm, but instead took place online via Zoom. Rare disease patient advocates discuss the benefits of newborn screening at a recent conference. (Photos by Larry Luxner) “We’re interested in this topic because our community feels poorly served by newborn screening,” said Nick Meade, policy director at Genetic Alliance UK, a national charity representing more than 230 British patient advocacy organizations. Meade said a newborn screening “patient charter” — launched in July 2019 — has already been endorsed by some 50 rare disease groups in Great Britain. “We care because a child born with a treatable rare condition with an immediate onset can be identified quickly; appropriate care, support and treatment can begin as soon as necessary to minimize the impact of the condition,” Meade said. “Treatments that stop the progression of a condition can be delivered before any impact can occur.” Timely treatment can result in the quick delivery of medicine, diet or some other intervention that might mitigate some conditions completely. In addition, timely information may help prospective parents avoid a “diagnostic odyssey” and give them the option of making reproductive choices. “Screening at birth can provide information to parents of a child with a rare condition much earlier than they would otherwise receive it. And the benefit of a diagnosis with rare disease is broad,” Meade said. “The avoidance of an agonizing and frustrating diagnostic odyssey that might take years — and that might deliver some incorrect diagnoses along the way — is an advantage to screening in itself.” Screening programs vary widely across EU ECRD2020 attracted some 1,500 delegates from 57 countries and was the first all-virtual conference ever hosted by Eurordis, a Paris-based coalition of national rare disease associations. Eurordis and its co-organizer, Orphanet, used the occasion to appeal to the European Union in Brussels to urgently approve standardized policies to advance the health and well-being of all Europeans. According to the International Society for Neonatal Screening, the number of conditions for which babies are screened, as of 2018, varied from only one or two in Belarus, Croatia, Latvia, Moldova, Poland, Romania, Slovenia and Ukraine, to 20 or more in Austria, Hungary, Iceland, North Macedonia, Portugal, Spain, Slovakia and Sweden. Sadly, Britain does not score highly when it comes to newborn screening, Meade said. Researcher at work in a specialized lab that focuses on genetic testing. “Research for some conditions requires newborn screening for case identification,” he said. “There are clinical trials currently recruiting overseas that would be impossible to deliver in the U.K. because we don’t have the screening programs. “Also, also new medicines receiving regulatory approval at the moment require early or pre-symptomatic administration, which is impossible without screening,” he added. Having a newborn baby screened for an array of potentially damaging genetic conditions also gives parents the opportunity for reproductive choice and planning, Meade said. “It allows couples to exercise reproductive choices if they want to, and the timing of the learning of this information can be crucial, because without screening, parents might only find out in their child’s third or fourth year of their risk, which means they might miss the opportunity for reproductive choices,” Meade said. PKU was first disorder to be screened On the flip side, he said, there are some limitations to newborn screening. These include parental anxiety due to false positives for the short period between the announcement of further investigations and the all-clear, as well as indeterminate results – those who might need monitoring and further surveillance without conclusive diagnosis. In addition, there’s a risk of over-diagnosis and over-treatment, particularly of conditions with a spectrum including mild forms, as well as stigmatization — the idea that the label of having a condition might be worse than the early diagnosis to a family or an individual. Display at a recent medical conference advertises genetic testing for a variety of neuromuscular diseases. Furthermore, children cannot consent to the process, which becomes more of an issue with later-onset conditions such as Huntington’s disease and declaration of carrier status. “Without minimizing the importance of these limitations, the majority of people living with serious rare conditions don’t weigh these issues highly,” Meade said. “That’s largely because they’ve experienced their lives with very little access to information about diagnosis.” Neonatal screening started in the 1960s and 1970s after phenylketonuria (PKU) turned out to be a treatable condition. PKU is an enzyme deficiency that can impair brain development; it occurs in 1 in 18,000 newborns and the treatment is a diet low in phenylalanine. In that test, a baby’s heel was pricked, blood was placed on a “Guthrie card” that was mailed to a lab, which tested the blood for the presence of the disease. “But when this happened, people felt this was such a big possibility – that all children diagnosed with PKU should be put on a special diet as soon as possible,” said Martina Cornel, professor of community genetics and public health genomics at the Amsterdam University Medical Centre. “Even if it was a rare condition, it was an important health problem.” The potential of genome sequencing These days, a modern tandem mass spectrometry newborn screening test — introduced in the 1990s — allows for the detection of up to 50 conditions including PKU. And genome sequencing in the newborn could detect at least 884 conditions, said Meade. Meade said the potential of genome sequencing in the newborn should be examined in a pilot program — though it remains to be seen whether such a program is cost-effective, which conditions should be screened for, and how those conditions should be selected. “Families affected by conditions that are not screed for at birth face a diagnostic odyssey — thankfully now significantly shortened — plus the missed opportunities for treatment, information, planning and progress in understanding the condition that could have come from a screening program.” In 2010, only a handful of countries screened for 20 conditions or more: Austria, Hungary, Iceland, Netherlands, Portugal, and Spain, said Cornel, who’s also vice-chair of the Dutch Patient Alliance for Rare and Genetic Diseases (known by its Dutch acronym VSOP). “In the Netherlands, we started screening for PKU in 1974, and in 2006 we added many more diseases. We now screen for more than 20,” she said, noting that some European countries such as Albania still don’t offer newborn screening at all. “All newborns need to be offered screening programs,” Cornel said. “The goal is to identify infants with conditions for which effective therapy is available. Early treatment can prevent or ameliorate the disease, so that affected children can live healthier lives.” Other speakers at the newborn screening panel included Richard Scott, MD, clinical lead for rare diseases at Genomics England, Sara Hunt, CEO of Alex, a leukodystrophy charity, and Simona Bellagambi of UNIAMO, the Italian Federation for Rare Diseases. The post Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe appeared first on Sarcoidosis News. Link naar het originele artikel
  8. Outdoorsy

    Voorstellen dgotje

    Hallo Dave, heb jij de acute of chronische variant? Mooi dat de prednisolon bij jou goed helpt. Ik mag nog steeds prednisolon gebruiken. Maar ik heb een keuze gemaakt. Omdat alleen hoge dosering helpt heb ik de keus gemaakt om helemaal te stoppen. Dit omdat ik nog jong ben en op lange termijn de bijwerking heftig kunnen zijn. Ik ben nu wel ontzettend stijf en gewrichtspijn is verspringend, meestal enkel, polsen en heupen of schouders. Ik denk dus wel elke dag aan prednisolon en moet sterk zijn om ervan af te blijven. Ik wil graag een normaal leven. Ik vindt de bijwerkingen gewoon te fors om er even plezier van te hebben. Moeilijke keuzes. Jij ook sterkte met deze grillige ziekte.
  9. dgotje

    Voorstellen dgotje

    He, Richard... Na een korte pauze van prednison ging het weer mis... En zit ik in middels weer aan de prednison. Echter kleine stootkuur gehad en nu op een lage dosering. En ik voel me goed.... Na de corona periode gaan we kijken of ik kan afbouwen.... Misschien was de vorige keer wel te snel afgebouwd.... Heb nu betere hoop omdat ik me ook echt goed voel.... Wel weer helemaal opnieuw spieren en conditie opbouwen... Ik heb goede hoop... Jij sterkte...
  10. Outdoorsy

    Voorstellen dgotje

    Hallo Dave, Ik heb ook zware prednisolon kuren gehad, een jaar lang met wisselende dosis. Van 40 mg naar 5 mg. Bij 40 mg nam de gewrichtspijn en stijfheid af, maar was niet helemaal verdwenen. Moeheid, grieperig gevoel bleef bestaan zoals altijd. Ik merkte dat mijn spieren in volume en kracht afnamen. Nu ik een half jaar geen meer prednisolon merk ik dat ik inderdaad moeite heb om mijn spieren weer zo te krijgen als ze waren. Ik zie er nu dunner uit terwijl ik daarvoor gespierd was. Sporten hou ik maar even vol. Hoe harder ik sport of beweeg, hoe meer last ik 's nachts in bed heb, ik kan dan alleen maar op mijn rug liggen, elke druk op mijn spieren verneem ik en draai van links naar rechts. De spierpijn kan heftig zijn, wat resulteert in slapeloze nachten en slapen is een drama sinds ik sarcoidose heb. Groet, Richard
  11. I once heard an old man say that “a changed mind is a dangerous thing.” In the summer of 2017, I spent two months in the hospital due to spontaneous pneumothorax. My lungs are in pretty bad shape because of pulmonary sarcoidosis. I’ve been vividly remembering that time because of today’s pandemic era living conditions — isolation isn’t new to me. Today’s situation provokes a lot of stressful memories. I guess it’s safe to say that anyone living with a chronic health condition can develop post-traumatic stress disorder. Anyone who experiences the disorder can tell you first-hand how little things can trigger big emotional anxieties. Sarcoidosis combined with PTSD can have a person thinking and feeling all sorts of things. One minute you’re feeling great and “normal” (whatever that is) and the next minute you’re second-guessing your health because you got dizzy while standing up, or you may have pushed yourself a bit and now you’re slightly out of breath. These little triggers can have a profound effect on a person’s mental stability. Memories are hard to lose During my 2017 hospitalization, a great nursing staff closely monitored my condition. They were very down to earth and made me feel like I wasn’t an inconvenience to them or myself. After the two months of recuperating, I returned home to pursue a sense of normalcy. It was a slow process, but I got to a point where I was doing much better, eventually improving enough that I joined a gym to keep physically active, albeit in a somewhat controlled environment. About five months in, I experienced another spontaneous pneumothorax in my other lung. This episode was a little more tricky than the first. Throughout the summer of 2018, I was in and out of the hospital four times, one time being intubated in ICU for about two days. Thankfully I was able to recuperate and return home to my family and friends. Don’t disrupt your mental healing This past Monday was the two-year anniversary of my last spontaneous pneumothorax. Honestly, I’d been feeling some type of way about it. Although I wasn’t feeling depressed, I wanted to spend the day alone. Throughout the day, I had fleeting thoughts of that particular pneumothorax and the multiple hospitalizations associated with that event. Eventually, I shook the feelings of distress and tried to focus on the progress I’d made since then. Over the past three years, I’ve been cautious in regaining the life I had before the spontaneous pneumothorax. I’ve slowed down a bit, and now that I think about it, it seems like folks have taken pity on me — but that has to change so I don’t become a victim. It’s time to change your mind “A changed mind is a dangerous thing.” I think about that a lot now and it’s starting to make sense. I recently started editing video again, like I did professionally for over 30 years, and picked up a client who had no direction of how he wanted his project to go. I started working on his project months ago, and we finally finished the first part after many changes and wasted conversations. After submitting my invoice, he took issue with the cost, and then he told me that he had already had a budget in place and that my invoice had surpassed it. Sarcoidosis can cloud my judgment. I was feeling so happy and excited to get back into what I love doing, but I also felt obligated to take this job because I felt it may be the best I could do, thanks my health. For 30-plus years, I had a good life and career, but then sarcoidosis slowed things down. I may have lost a step or two, but I can still do what I love to do. Accepting something lesser just makes me think that I’m letting sarcoidosis dictate my path. If you still have a passion for something, do it. Don’t settle for anything because you think you’re broken. Sarcoidosis can’t and will not dictate your story. Apologize for nothing. Only you can tell your story — do it fearlessly. *** 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 Living with Sarcoidosis Can Change Your Thinking for the Better appeared first on Sarcoidosis News. Link naar het originele artikel
  12. Adding an array of spices to your meal is a surefire way to make it more tasty, but new Penn State research suggests it may increase its health benefits, as well. Link naar het originele artikel
  13. Earlier
  14. Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. The 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — which was set for May 14–15 in Stockholm, instead took place via Zoom. Eurordis and its co-organizer, Orphanet, used the occasion to appeal to the European Union in Brussels to urgently approve standardized policies to advance the health and well-being of all Europeans. Rare disease advocates hold up signs urging participants of ERDC2020 to post photos of themselves. (Photos courtesy of Eurordis) Yann Le Cam, CEO of Eurordis, said that as is the case with COVID-19, there is an obvious value to grouping efforts at the EU level in order to tackle rare diseases. But he lashed out at the increasing nationalism shown by various leaders responding to the pandemic. “We must quash this egocentric rhetoric emerging in some countries. It fragments Europe into diverging national-level decisions,” Le Cam, of France, said in his welcoming remarks. “A lack of EU coordination is both detrimental to the health of people living with a rare disease and has an unnecessary negative impact on the economy.” He urged the EU to take the following concrete steps: invest in research and innovation pass legislation that promotes competition and addresses unmet needs expand and consolidate the European Reference Networks create a structured EU approach to ensure sustainable access to orphan medicines, and new transformative gene and cell therapies for patients “This epidemic has shown that if you fail to prepare, you prepare for failure — and we must prepare together across borders,” said Terkel Andersen, president of the Eurordis board. Eurordis is a nonprofit alliance of 900 rare-disease patient organizations from 72 countries that work jointly to improve the lives of Europeans with rare diseases. Orphanet provides high-quality information and data on rare diseases. With its 40-nation network, Orphanet helps to orient patients and doctors to relevant expert resources in Europe and beyond. The EU considers a disease rare if its incidence is lower than 1 in 2,000 people. About 30 million of the 446 million citizens who live in its 27 member states have a rare disease. Yet because of the low prevalence of each disease, medical expertise is uncertain, care offerings inadequate, and research limited, said Orphanet’s director, Ana Rath. She noted that 72% of rare diseases are genetic — and that 70% of those genetic conditions begin in childhood. “Now more than ever, the EU has a vital role to play in improving the health of its citizens. ECRD2020 focuses on how to build policies and services over the next decade that will improve the journey of living with a rare disease for patients and families,” Rath said. ‘We need to take lessons from COVID-19’ Attendance at this year’s virtual conference was up 81% compared to the 850 people who attended ECRD2018 in Vienna. It followed six broad themes, ranging from the future of diagnosis to the digital health revolution. The online conference program ran 54 pages, with specific breakout sessions covering topics from newborn screening for genetic diseases to how best to bring real life into therapeutic development. The European Conference on Rare Diseases took place May 14–15 online. Several top EU officials addressed participants via Zoom, including Stella Kyriakides, the European commissioner for health and food safety. She said ECRD2020 builds on the work of the ongoing Rare 2030 Foresight Study, which will conclude in 2021 with a comprehensive set of key recommendations to EU leaders on how to improve rare disease policy. “In the coming years, we will be guided by the Rare 2030 Foresight Study,” Kyriakides said. “We need now to take lessons from COVID-19. We know that patients will be the driving force of our rare disease policy.” Europe currently accounts for more than one-third of the 4.7 million confirmed COVID-19 infections worldwide, with cases stretching from Madrid to Moscow. Infection rates, however, varies widely among EU member states. Another major theme of ECRD2020 was how to ensure non-discrimination on the basis of health and disability. Officials addressing that theme included David Lega, a Swedish member of the European Parliament; Jana Popova of the Bulgarian Association for Neuromuscular Diseases; and Helena Dalli, European commissioner for equality. “All people should be able to participate fully and equally in society and in the economy,” Dalli said. “It is not only their right. Their participation represents a huge contribution to the whole society.” The ECRD2020 conference was co-chaired by Maria Montefusco, president of Rare Diseases Sweden; Milan Macek, a professor of medical and molecular genetics at Motol University Hospital in Prague; and Violeta Stoyanova-Beninska, chair of the Committee of Orphan Medical Products at the Amsterdam-based European Medicines Agency. The post Unity and EU-wide Efforts Focus of Online Rare Disease Meeting appeared first on Sarcoidosis News. Link naar het originele artikel
  15. Joachim

    The Season of Sneezing Is Upon Us

    Runny nose, sneezing, coughing, and itchy, watery eyes. Getting a breath of fresh air ain’t what it used to be. Spring allergy season is underway in the U.S. And it’s going to be a lengthy, brutal stint for those of us in the East, according to AccuWeather meteorologists. My main health battle is sarcoidosis, but Mother Nature brings her share of skirmishes, like summer heat, rainy days, winter weather, and spring’s bloom. I foolishly hoped I would be spared this year with the increased time indoors, but no such luck. May is National Asthma and Allergy Awareness Month in the U.S. More than 60 million of us battle the duo across the country, according to the Asthma and Allergy Foundation of America (AAFA). That includes 19 million adults and 6.2 million children with asthma and 20 million adults and 5.6 million children with hay fever, rhinitis, or nasal allergies. Spring is a peak time for allergies, but many of my symptoms began to linger year-round. I determined the culprits causing my misery through allergy skin tests in October. It was a short process. My forearms became pin cushions for dozens of tiny needles that were briefly inserted. Then I was sent to a waiting room for a few minutes and brought back so that they could measure responses to the injections. My allergies are dust mites, Timothy grass, and cockroaches (which I was told includes a number of different insects). Allergy test. (Photo by Athena Merritt) The one-two punch: Asthma and allergies Having asthma and allergies concurrently is common, and allergies can trigger asthma symptoms in some, the Mayo Clinic reported. Pinpointing my allergies enabled me to be proactive in avoiding irritants and managing my asthma, which is important since lungs are affected in more than 90% of people with sarcoidosis. Unfortunately, with gyms closed, going outdoors to exercise means having to battle allergies, too. To reduce symptoms, I use a certified Asthma & Allergy Friendly vacuum cleaner, HVAC filter, and air purifier. Many of the other changes I’ve made require effort, not money, such as keeping windows closed, washing sheets weekly in hot water, changing clothes when I come in from outdoors, and dusting and vacuuming frequently. AAFA, which released its 2020 Allergy Capitals report about the top U.S. cities affected by seasonal allergies, offers many more tips. Stay safe. Stay healthy. And if you suffer from allergies, stock up on tissues. Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear. Little libraries, big hearts: The Little Free Library has 100,000 free book-exchange boxes in neighborhoods worldwide. Many operators are removing the books and filling them with food and personal care and household items to help those in need during the COVID-19 pandemic. To find locations, check out the Sharing-Box Map. Play on: The first pitch has yet to be thrown at the Texas Rangers’ new $1.2 billion stadium due to the COVID-19 pandemic. But the parking lot will soon be put to use to host drive-in concerts, USA Today reported. *** 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 The Season of Sneezing Is Upon Us appeared first on Sarcoidosis News. Link naar het originele artikel
  16. As many people know, bladder infections can be a painful and recurring condition, and those who are prone to the infections often report they have to "go" with greater frequency and urgency. Link naar het originele artikel
  17. Sarcoidosis, and the medications prescribed to patients with the disease, do not lead to worse outcomes from COVID-19 infection, according to preliminary results of a survey conducted by the Foundation for Sarcoidosis Research (FSR). Though more participants are needed to confirm the results, the data are noteworthy for what they do not show: a strong association between sarcoidosis and poor COVID-19 outcomes. “Although more sarcoidosis patients need to participate in this survey to reach definite conclusions, these preliminary results are reassuring,” Marc Judson, MD, a co-investigator of the study, said in a press release. “These data show no obvious signal of a particularly poor outcome from COVID-19 infection in sarcoidosis patients.” The Centers for Disease Control and Prevention has stated that people with compromised immune systems may be at an increased risk of severe COVID-19 symptoms. As sarcoidosis is a disorder that affects the immune system, the FSR and researchers at the University of Cincinnati launched a survey in mid-April. Their goal was to investigate whether having sarcoidosis increased the risk of COVID-19 infection and of having more severe symptoms. The survey also evaluated whether certain medications prescribed for sarcoidosis, some of which also affect immune system activity, had any impact on COVID-19 outcomes. More than 1,600 people with sarcoidosis have taken the survey, which is available on the FSR website. Results showed that among survey responders, less than 2% (31 patients) reported having COVID-19, a slight increase from the national average. “When COVID-19 began, there was controversy about the additional risks of sarcoidosis and treatments,” said Bob Baughman, MD, of the University of Cincinnati and the principal investigator of the study. “This information, although only preliminary, found the rate of infection only slightly higher than the national average. Sarcoidosis patients with COVID-19 mostly did well, which is what we are seeing for many other patients.” The survey found that most of the sarcoidosis patients with COVID-19 were able to be treated at home, and none required the use of a ventilator. Many sarcoidosis treatments, including the corticosteroid prednisone and the monoclonal antibody Remicade (infliximab), are designed to modulate immune system activity. Researchers are, therefore, also investigating whether this immune system modulation can impact COVID-19 outcomes. Initial survey results indicate that the use of these medications is not associated with an increased risk of COVID-19 infection or poor outcomes. “These preliminary results do not suggest steroids or other immunosuppressive medications are placing sarcoidosis patients at greater risk of poor outcome,” said Judson. “This has been an important undertaking by the FSR.” Another treatment sometimes prescribed for sarcoidosis, called hydroxychloroquine, has shown some evidence in relieving COVID-19 symptoms in severe cases. The U.S. Food and Drug Administration has approved it for emergency use in COVID-19 patients, but has cautioned against its unsupervised use outside of hospital or clinical trial settings. The survey found that hydroxychloroquine treatment was not protective against infection, nor was it a risk factor. The data also revealed that the race of participants was not associated with an increased risk of COVID-19 infection. Overall, the data are still preliminary but thus far the results indicate that sarcoidosis and prescribed treatments are not associated with an increased risk of COVID-19 infection or severe symptoms. The survey is still ongoing, and all participants will be asked to take a follow-up questionnaire in July. The post Sarcoidosis Does Not Increase Risk of Worse COVID-19 Outcomes, Early Survey Data Show appeared first on Sarcoidosis News. Link naar het originele artikel
  18. A study led by researchers at the Babraham Institute in collaboration with the Wellcome Sanger Institute has uncovered how variations in a non-protein coding 'dark matter' region of the genome could make patients susceptible to complex autoimmune and allergic diseases such as inflammatory bowel disease. The study in mice and human cells reveals a key genetic switch that helps immune responses remain in check. Published today in the leading scientific journal Nature, the research, involving collaborations with research institutions in the UK and worldwide, identifies a new potential therapeutic target for the treatment of inflammatory diseases. Link naar het originele artikel
  19. Joachim

    Lingering Questions About Lyme Disease

    I felt vindicated last year when researchers reported Lyme disease could potentially trigger sarcoidosis. I’ve been trying to get physicians to see a link between the two for years. I used to expect some dramatic “aha” moment when I reported that my sarcoidosis arrived a year after my Lyme disease. Instead, it’s just dutifully recorded into their notes and dismissed as being irrelevant. May is National Lyme Disease Awareness Month in the U.S. The physicians I’ve encountered consider my Lyme disease a closed chapter, but I still have questions. I hope researchers further explore the connections between the two diseases that changed my life. Many of the problems I experienced with Lyme disease re-emerged with sarcoidosis, such as debilitating fatigue, achy joints, and brain fog. Numerous other symptoms arrived later, such as numbness, tingling, and postural orthostatic tachycardia syndrome — all of which can result from either sarcoidosis or Lyme disease. That makes me question whether Lyme disease is more than just a trigger for sarcoidosis and what role, if any, it continues to play in my ongoing symptoms. Merging health battles I never had the telltale bullseye rash associated with Lyme disease infection, so it took weeks to find a physician who thought the stiffness spreading through my joints, after canoeing in New Jersey, warranted testing. After receiving positive results and other causes were ruled out, I was prescribed antibiotics. It took three courses of doxycycline and two months of sick leave before I rebounded. I thought that was the end of it, but a year later many symptoms continued popping up (migraines, fatigue, and joint pain). A nagging cough led me to my sarcoidosis diagnosis. That was the beginning of what would become a very convoluted health battle that has left me with more questions than answers. I’ve been unable to get physicians to consider any connection to my 2001 tick infection and my health problems today. The study “Controversies in Persistent (Chronic) Lyme Disease,” published in the Journal of Infusion Nursing in 2016, highlights the many reasons why. But, pain and fatigue persist in many with sarcoidosis, even in clinical remission. In my case, I wonder if my past Lyme disease is the reason. Borrelia burgdorferi is the bacterium that causes Lyme disease. In 1992, a study of 33 people with confirmed sarcoidosis concluded Borrelia burgdorferi infection can cause sarcoidosis and that sarcoidosis might be a type of Lyme disease. A 2018 paper also theorizes that Borrelia burgdorferi could act as a trigger for sarcoidosis. I hope this is explored on a much wider scale in the future, if it hasn’t been already. I’ve had to accept a lot of new normals with sarcoidosis. For me, the nagging question remains whether doctors should be focusing on my history of Lyme disease, too. Is it possible it wasn’t fully eradicated? Could the antibodies from it be fueling my sarcoidosis? Could my many symptoms, which persist despite rounds of steroids, be banished by a course of intravenous antibiotics? Physicians could be right. Maybe Lyme disease has no bearing on my current health. But, there are a lot of unknowns when it comes to sarcoidosis. I hope research will one day settle the many questions in the back of my mind about connections between the two diseases. Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear. Sarcoidosis/COVID-19 impact: A questionnaire aimed at gauging the impact of COVID-19 in the sarcoidosis community has already received more than 1,600 responses from those with the rare disease. So far, 31 reported having COVID-19. None of those 31 needed mechanical ventilation and most were treated at home. The Foundation for Sarcoidosis Research and University of Cincinnati study is ongoing. To learn more or to participate click here. Good karma: Native American relief to the Irish during the great potato famine in 1847 has not been forgotten according to Time Magazine, which reported the Irish are donating heavily to a GoFundMe campaign to help the Navajo community now severely affected by COVID-19. Guilt-free binge: The Verge reported this month on eight sites for online courses, many of which are free. Binge away! *** 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 Lingering Questions About Lyme Disease appeared first on Sarcoidosis News. Link naar het originele artikel
  20. The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other disease-related issues and those brought by the pandemic. Developed and led by the RDCRN Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, the research survey is one of the first nationwide efforts to measure how this public health crisis is challenging the 30 million people in the U.S. estimated to have one of about 7,000 known rare diseases. The survey was prompted by discussions among scientists and patient advocacy groups about concerned voiced by patients, families, and caregivers regarding COVID-19. It aims for responses from at least 5,000 individuals with a rare disease or those caring for that person. Participation is open to anyone diagnosed with a rare disease, defined in the U.S. as a disorder affecting less than 1 in every 200,000 people, up through 89 years old. Only adults can complete the survey, which RDCRN anticipates takes about 20 minutes. “People affected by a rare disease, and families and caregivers, initially asked how to avoid the virus,” Tiina Urv, PhD, RDCRN program director, said in a press release. “Then they became concerned about access to medicines and maintaining medical care during the pandemic, and the status of clinical trials. “They were concerned about meeting the medical challenges that they face every day. We were hearing enough anecdotally that we wanted to get a clearer picture of the problem,” Urv added. Investigators also hope to incorporate survey results into natural history studies of these chronic and often genetic diseases. Survey topics cover a range of issues, and people from given rare disease communities are expected to have needs and concerns that differ from other communities. Those concerns can include how to get medications or physical therapy, or how to navigate an emergency room if the situation arises. “We hope the study questionnaire will help us better estimate the proportion of rare disease patients who have been diagnosed with COVID-19, and find out how they are affected whether or not they had COVID-19,” said Maurizio Macaluso, MD, of Cincinnati Children’s, and project principal investigator. “This survey provides an opportunity for the rare disease community to get timely data on the challenges they face.” Survey results may also help to answer questions about whether some patient subgroups fare better or worse after contracting COVID-19, or whether some are more susceptible to infection due to their disease. Its overarching is to determine how the RDCRN, through its network of healthcare specialists and patient advocacy groups, can help to address concerns expressed by rare disease communities. “As a leader in fostering innovative, collaborative clinical research to improve the lives of individuals with rare diseases, the RDCRN is uniquely positioned to carry out a survey like this,” said Anne Pariser, MD, director of the National Center for Advancing Translational Sciences (NCATS) Office of Rare Diseases Research. “The network has the necessary infrastructure, disease expertise, and access to patients through patient organizations to find answers to important questions.” The RDCRN is part of the Office of Rare Diseases Research, and is led by the National Institutes of Health’s NCATS in collaboration with nine other NIH agencies. It is composed of 20 funded clinical research groups working to better understand how rare diseases progress, and to develop better ways of diagnosing and treating them. In collaboration with about 140 patient advocacy groups, researchers from multiple disciplines globally study hundreds of rare disorders. Worldwide, an estimated 400 million individuals are thought to have a rare disease. “The survey is a great example of how the consortia and patient groups are working together as a network to make a difference for the entire rare disease community,” Urv said. For more information on the COVID-19 survey, including how to participate, click here. Questions can also be sent by email to the study team at The post Rare Diseases Clinical Research Network Opens Online Survey on COVID-19 appeared first on Sarcoidosis News. Link naar het originele artikel
  21. When Castleman Disease patients have a flare of their symptoms, they experience a cytokine storm inside their bodies—a hyper-response from the immune system that can cause a fever, organ failure, and even death. Now researchers at the Perelman School of Medicine at the University of Pennsylvania say they know what's happening at the cellular level of the immune system when these cytokine storms occur, and the answer not only informs future potential Castleman therapies but may also provide new insight into why similar events take place in COVID-19 patients. The researchers published their findings today in the Journal of Clinical Investigation Insight. Castleman Disease isn't actually a single disease. Link naar het originele artikel
  22. Necrotizing enterocolitis (NEC), a rare inflammatory bowel disease, primarily affects premature infants and is a leading cause of death in the smallest and sickest of these patients. The exact cause remains unclear, and there is no effective treatment. No test can definitively diagnose the devastating condition early, so infants with suspected NEC are carefully monitored and administered supportive care, such as IV fluids and nutrition, and antibiotics to fight infection caused by bacteria invading the gut wall. Surgery must be done to excise damaged intestinal tissue if the condition worsens. Link naar het originele artikel
  23. Joachim

    I’m Quarantine Ready, Thanks to Sarcoidosis

    I’ve been managing all right while being holed up alone since mid-March. But when I see my family and can’t hug them, I break inside. My mom worries, so twice a month I drive over and wait outside. From 6 feet or more, she mothers, telling me I should have a coat on and judging whether I’m eating enough. I randomly cry for days after that, mentally unpacking the wounds my sarcoidosis is causing again. Unable to wrap my arms around my family, I’m left with only words to comfort them. I tell them I love them. I’m being safe. I remind them that my lengthy battle with this rare disease has made me more prepared than others for times like these. I never believed the rhetoric that COVID-19 wasn’t serious, would disappear on its own, or would cause problems only for a small minority of people. I felt déjà vu about what I was told when diagnosed with sarcoidosis, which still affects me nearly 20 years later. So, I did what battling an unpredictable disease has taught me to do. I hoped for the best but planned for the worst. Pulling from my playbook I already had experience avoiding viral threats because of my many rounds of prednisone, which suppresses the immune system. This time around, I’m getting a helping hand from people who are social distancing, wearing masks, and mostly staying home. Sarcoidosis taught me the hard lesson of unexpected, indefinite job loss. That’s why I keep enough in savings to cover bills without income coming in. And it’s why I reentered the workforce last year with a backup plan: two part-time jobs, one of which I could do from home. I budget carefully because unexpected medical expenses are common when dealing with a disease whose path can’t be predicted. Adding a recurring expense means first cutting the equivalent elsewhere. My budgeting habits have backfired at times, like passing up what are now the hardest items to find because of hoarding. Over the years, I’ve also learned to take new normals in stride. My zombie-like fatigue often leaves me with limited windows to get things done. I’ve become adept at tackling tasks in as little time as possible, which is handy when venturing out into a pandemic for essentials. But I’m equally skilled at getting by without going out because of many symptoms, such as syncope, which keep me homebound. It’s not as easy now as it was in the past, with so many people competing for the same resources. Grocery delivery and pickup services are often completely booked. So, I have had to get creative. I’ve taken advantage of Panera Bread’s new grocery offerings and used contactless pickup to get water from a beer distributor. With meat shortages now on the horizon, I plan to turn to local farms and butchers and add more vegetarian meals to my diet. It’s a worrisome time to have sarcoidosis. But if it wasn’t for this disease, I wouldn’t have gained the many experiences that are helping me now. Brighter side: We all could use a break from bad news. I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear. Feeling cooped up? You can explore some of the planet’s most beautiful places in The New York Time’s “World Through a Lens” series. Take a virtual tour of museums from around the world, which Travel + Leisure magazine reported on. Or embark on the 12 best virtual vacations compiled by TripSavvy. Got milk? Sassy Cow Creamery in Wisconsin put a refrigerator outside in March, called the “Kindness Cooler,” to provide free milk and dairy products to those in need. The creamery has been giving away more than 400 gallons of milk daily and plans to keep it stocked through the pandemic, CNN reported. *** 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 I’m Quarantine Ready, Thanks to Sarcoidosis appeared first on Sarcoidosis News. Link naar het originele artikel
  24. An enzyme called chitotriosidase appears to be a reliable biomarker of sarcoidosis, a study suggests. The activity of this enzyme is correlated with sarcoidosis disease activity, severity, dissemination throughout the body, and may reflect the number of active granulomas within a given patient. The study, “Chitotriosidase: a biomarker of activity and severity in patients with sarcoidosis,” was published in the journal Respiratory Research. Chitotriosidase has the ability to defend the body against bacterial pathogens that contain the molecule chitin, but it is also involved in numerous other immune system functions. The enzyme is found in high levels in the serum and lungs of patients with sarcoidosis, and some studies have suggested it can predict the course of the disease, a patient’s responsiveness to steroid treatment, and the likelihood of relapse. Just how useful chitotriosidase is as a biomarker for sarcoidosis, however, has not been fully understood. Questions remain regarding its utility in identifying different types of sarcoidosis, tracking the disease through various organs, and on how reliable it is with patients on steroid therapy. To address these questions, researchers in Siena, Italy, assessed chitotriosidase activity in blood samples from records of 694 sarcoidosis patients (mean age of 55.8 years), and 101 healthy people used as controls (mean age of 52.2 years). In addition to blood samples, patients with high-resolution chest X-ray images were classified according to the presence and extent of any abnormalities. Patients were further classified into either steroid-free or steroid groups, according to their corresponding treatment. Patients using other medicines, in addition to steroids, for sarcoidosis were included in the steroid group. Results showed that sarcoidosis patients had significantly higher chitotriosidase activity than did healthy controls. Importantly, the enzyme’s levels correlated with the concentration of angiotensin-converting enzyme, a marker of sarcoidosis. Among steroid-free patients, chitotriosidase activity also significantly correlated with physical symptoms of difficulty breathing (exertional dyspnea) and coughing. As a measure of disease severity, chitotriosidase activity was in line with chest X-ray findings, the involvement of multiple organs, and treatment modification such as changing steroid doses. In particular, severe X-ray findings, such as lung fibrosis with fibrous densities (reticular abnormalities) and irreversible dilation of the bronchi (traction bronchiectasis) was associated with significantly higher chitotriosidase activity. Chitotriosidase activity also rose with increasing involvement of organs beyond the lungs. Patients with abdominal involvement, in particular, and those with three or more affected organs apart from the lungs, showed higher chitotriosidase levels. Follow-up clinical assessments and chitotriosidase assays were available for 416 patients. In cases where there were five or more years of follow-up data available, the researchers noticed that chitotriosidase activity rose with a patient’s increasing need for treatment and with the risk of relapse. Based on their findings, the researchers proposed two cutoff values for pathological chitotriosidase activity. They suggested that a value of 48.8 nanomoles per hour per milliliter (nmol/hr/mL) can accurately distinguish sarcoidosis patients from otherwise healthy people, and that an activity higher than 126 nmol/hr/mL indicates persistent disease cases that require increased care. Although more studies are needed, the results suggested that “chitotriosidase is a reliable biomarker of sarcoidosis,” and that its levels correlate “with disease activity, severity and multiorgan dissemination,” the researchers wrote. They thus suggested that chitotriosidase laboratory determination “should be part of the regular follow-up of sarcoidosis patients in the daily clinical practice.” The post Chitotriosidase Enzyme May Be Indicator of Sarcoidosis Activity, Severity appeared first on Sarcoidosis News. Link naar het originele artikel
  25. Outdoorsy

    Voorstellen Outdoorsy

    Ik heb nog steeds sarcoidose. Mijn ACE was in 2019 torenhoog, zo hoog was het nog nooit geweest en een pet scan liet activiteit zien in alle klieren en daarom kreeg ik vanaf dat moment de diagnose chronische sarcoidose. Nu heb ik net bericht gekregen dat ik 100% afgekeurd wordt en een IVA krijg. Ik mis mijn werk wel. Maar ik kan niet anders, ben iedere dag erg moe, slaap slecht vanwege zweten en stijve pijnlijke spieren of gewrichten, kan alleen maar op mijn rug liggen. Mijn gewrichtspijn/aanhechtingen zijn ook nog steeds aanwezig. Ik heb vooral pijn aan enkels, heupen, schouders, handen en polsen, altijd symmetrisch en verspringend. Verschillende dosis prednisolon geprobeerd en alleen hoge dosis 30 mg helpt, zodra dit zakt komt alles terug, daarbij komt dat vermoeidheid blijft bestaan, ik slik dit dus niet meer. Ik blijf in beweging, maar moet vaak weer stoppen door pijn dat intenser wordt. Ik ben in behandeling bij een sarcoidose specialist in de Martini ziekenhuis. Ik kom de dag wel door, loop wat rondjes door de tuin, maar moet vaak weer naar binnen om op de bank te hangen. Klinkt wat negatief allemaal, maar dat is sarcoidose.
  26. Joachim

    We’re Stronger Than We Think

    Every day is a new adventure, and this pandemic certainly has been challenging. Every morning, I give thanks for seeing another day. I ask to become a better person than I was the previous day. I also give thanks for my family, and believe it or not, for my health and some of the issues I face with sarcoidosis. To be clear, I’m not thankful for sarcoidosis, but rather that I’m able to live another day. I usually end my morning meditation with a plea to keep myself out of my own way. Three weeks ago, my pulmonologist called. We were supposed to have a follow-up visit st, but because of self-quarantine and social distancing, he was conducting appointments by phone. I was surprised to hear from him, but glad that he had reached out to see how I was doing in this new way of life. I told him all was well. He asked the quarantine questions: Have I been exposed or around anyone that has tested positive for COVID-19? Am I sheltering in place? Have I experienced any of the symptoms? Thankfully, my answer to the last question was “nope!” Next, we discussed my hospital stay last February. At the time, I was being considered for an alternative therapy for my pulmonary sarcoidosis. As it turned out, I wasn’t a candidate for the treatment, but I told the doctor I wanted to seek other opinions. He agreed and offered suggestions for going forward. He recommended that when the stay-at-home order is relaxed, I should start making phone calls to schedule an appointment at other medical facilities. Before we ended our call, he told me he would fully support any decision I made. He added, “You know, you’ve been through a lot over the years, and I don’t have a problem telling anyone how tough you are.” Needless to say, that really hit home. I hadn’t really thought about all of the health issues I’ve experienced because of sarcoidosis. When the doctor reminded me how tough I am, I thought about my past health issues. During this time of self-quarantine and social distancing, we should all remember how tough we are. Quarantining, social distancing, and constantly being mindful of an invisible virus are mentally and emotionally taxing. But we’re tougher and stronger than we might appear to be. Sarcoidosis constantly throws curveballs our way, and we often hear about our new normal. That may be true, but what constitutes normalcy? When you think about it, a new normal to many is merely an adjustment for us. So, let’s take this time not only to adjust our way of living, but also our way of thinking. We’ve lived with sarcoidosis, and we can live through this pandemic. Stay focused, encouraged, and healthy. *** 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 We’re Stronger Than We Think appeared first on Sarcoidosis News. Link naar het originele artikel
  27. Joachim

    Psoriasis tied to higher Alzheimer disease risk

    (HealthDay)—The incidence of Alzheimer disease (AD) is significantly higher in patients with psoriasis versus individuals without psoriasis, according to a Korean study published online April 15 in Scientific Reports. Link naar het originele artikel
  28. As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the National Organization for Rare Diseases (NORD), an umbrella coalition of some 280 rare disease patient advocacy groups. Vanessa Boulanger About two-thirds of the 772 people who responded are rare disease patients; the rest are caregivers. Three-fourths of those who took part in the survey are age 40 or older, said Vanessa Boulanger, NORD’s director of research. Boulanger spoke April 21 during a half-hour webinar that also featured three other NORD officials: Jill Pollander, director of patient services; Rachel Sher, vice-president of policy and regulatory affairs; and Katie Kowalski, senior manager of education programs. Initial findings show that 98% of survey participants are afraid of catching COVID-19 (with 67% saying they are “very” or “extremely” worried). In addition, 95% of respondents have been affected to some degree by the pandemic, and 60% worry about shortages of medication and medical supplies. The poll also showed that: 39% have had challenges accessing medical care or treatment 74% had medical appointments canceled due to COVID-19 59% have been offered phone or video calls as alternatives to in-office appointments 29% have lost jobs temporarily or permanently due to COVID-19 40% of households have been affected by loss of income 11% of job losses also have resulted in loss of health insurance “I think this crisis underscores the critical need for standardized measures,” said Boulanger, adding that this is the first in a series of surveys NORD is conducting in order to address the rare disease community’s biggest concerns. “There’s also an opportunity to re-envision clinical trial design, which may reduce geographic and time-related barriers for patients. Virtual design may also present new opportunities for rare-disease patients moving forward,” she said. NORD offers advice, financial aid NORD’s webinar took place as the number of people infected worldwide surpassed 2.5 million, making this the worst pandemic in more than a century. As of April 22, the disease had infected more than 800,000 Americans and killed nearly 45,000 — with the U.S. accounting for more than a quarter of the world’s total deaths. Pollander said NORD currently fields an average 1,148 emails and 1,736 phone calls per week. Jill Pollander “We answer lots and lots of questions, some related to coronavirus and living through this pandemic, and others more typical of living with rare diseases in general,” she said. “We are not providers of care, but we can help patients maneuver through this obstacle course.” Pollander added: “We’re asked to decipher a plethora of information circulating online. Lots of websites, links and webinars are out there, but for reliable, user-friendly information that’s all in one place, visit the NORD landing page with current, reliable and reputable content.” On April 15, NORD established its COVID-19 Rare Disease Critical Needs Non-Medical Assistance Fund, which provides financial aid to rare disease patients who qualify. “We are committed to providing immediate help for the things that many of our community members so desperately need — things like travel, lodging, rent and mortgage payments, utilities, support during school closures and emergency repairs to cars, homes and appliances,” Pollander said. Assistance is based on eligibility and available funds. Review criteria includes: confirmation of a rare disease diagnosis; evidence that the need is driven by the COVID-19 pandemic; financial eligibility and confirmation that the aid requested is consistent with non-medical program criteria. “Life is challenging enough these days, so we try to make the applications as easy as possible,” Polander said. “In a phone call that can take 10 minutes, we can determine if you’re eligible for assistance, and move forward from there.” NORD’s RareCare network currently covers 57 rare diseases ranging from acute lymphocytic leukemia to Zellweger spectrum disorders. It has active programs in all 50 states and the District of Columbia, with 6,025 people enrolled in such programs this year. For more specific information on the fund, call NORD at 203-242-0497, or send an email to Getting Congress to act But NORD also is active on the legislative front, Sher said. “Our policy team has been extremely active since the beginning of the coronavirus crisis,” she said. “As we all know, social distancing has had some particularly challenging effects, and access to healthcare for patients who have been told to stay home is a major concern.” Rachel Sher Among other things, the coalition has written to Congress, asking key Democrats and Republicans to remove burdensome barriers to obtaining medications so they can avoid hospitals and doctors’ offices. “It is a particular concern to maintain a consistent supply for people who take an approved medication that is being studied for use in COVID-19, such as hydroxychloroquine, which is used to treat lupus and rheumatoid arthritis,” said a March 20 letter signed by NORD and 94 other nonprofit groups. “So far, CMS [Centers for Medicare & Medicaid Services] has encouraged flexibility in Medicare, and states have flexibilities through 1135 waivers to relax refill limits,” the letter reads. “However, implementation is uneven, and plans and states cannot relax controlled substance guidelines on their own. Congress must take immediate, national action to ensure access to medications.” According to Sher, “for patients who obtain critical infusion therapies, it’s become necessary to get treatments at home instead. But for many, there have been impediments to getting insurance. Some private and public health insurers have placed limits on refills, so we’re calling on congressional leaders to expand refill access during this crisis.” Sher said NORD also has been working to ease state licensing restrictions on telemedicine, thereby reducing the need for rare-disease patients to travel to see their doctors. “We’ve all heard concerns about hospital systems becoming overwhelmed. States and hospitals have been trying to develop guidelines on triage in the event critical lifesaving equipment becomes scarce,” she said. “For the rare disease community, this is a frightening prospect indeed.” NORD’s webinar series are funded by Sanofi Genzyme, Biogen, Horizon Therapeutics and Strongbridge Biopharma. The next webinar, set for May 5 at 2 p.m. EST, will feature Rishi Desai, MD, on testing and treatments for COVID-19, as well as the search for a vaccine. The post NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts appeared first on Sarcoidosis News. Link naar het originele artikel
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