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  2. Joachim

    What to know about cyclosporine

    Cyclosporine is a prescription drug that works to suppress the immune system. It can help treat rheumatoid arthritis and psoriasis. This article looks at its uses, dosage, side effects, and risks. Link naar het originele artikel
  3. Gisteren
  4. Joachim

    What to know about Xeljanz

    Xeljanz is a prescription medication that treats rheumatoid arthritis, psoriatic arthritis, and ulcerative colitis. This article provides an overview of its uses, how it works, and side effect warnings. Link naar het originele artikel
  5. The power of perseverance Marvel Studios is rereleasing “Avengers: Endgame” with new footage this Friday, June 28, in a final push to topple the box office record set by “Avatar.” Whether you are among those who consider the move to be thrilling, desperate, or a cash grab, it’s an example of perseverance that those of us living with sarcoidosis should live by — a mantra to never give up. This aggressive move can teach us a few lessons, whether or not we are Marvel fans. Chris Hemsworth as Thor in “Avengers: Endgame.” (Courtesy of Film Frame ©Marvel Studios 2019) If at first you don’t succeed … Since its record-breaking opening in April, “Avengers: Endgame” has raked in $2.749 billion worldwide as of June 23, which is still shy of the $2.788 billion record set by “Avatar.” With slowing ticket sales and the chances of surpassing “Avatar” slipping out of reach, the executives at Marvel Studios didn’t sit around with their fingers crossed, hoping — they acted. Sarcoidosis can be difficult to diagnose and challenging to treat because of the disease’s unpredictable nature. In some people, the disease disappears without treatment; for others like myself, it’s a lengthy, wide-ranging battle. The fight is one that requires our hidden superpowers — and chief among these is perseverance. As actor Dwayne Johnson says, “Change doesn’t begin when we get knocked on our a**. It begins the moment we decide to get back up on our own feet.” Robert Downey Jr. as Tony Stark/Iron Man in “Avengers: Endgame.” (Courtesy of Film Frame ©Marvel Studios 2019) Try, try again Will moviegoers be persuaded to hand over more cash to watch what Marvel Studios President Kevin Feige told Screen Rant will be “a deleted scene, a little tribute, and a few surprises” appearing after the movie’s credits? Perhaps. Or maybe not. The lesson to be learned here is that Marvel Studios is rolling the dice and trying a new approach in its efforts to cement the movie as the top-grossing film of all-time. Similarly, when managing our healthcare, we can seek successful outcomes by keeping abreast of new developments in the treatment of sarcoidosis. So when one approach isn’t effective, instead of sitting idly by and hoping for the best, we can pursue other alternatives. Or, according to the saying, widely attributed to Chinese philosopher Confucius, “When it is obvious that the goals cannot be reached, don’t adjust the goals, adjust the action steps.” From left, “Avengers: Endgame” cast: Hawkeye/Clint Barton (Jeremy Renner), War Machine/James Rhodey (Don Cheadle), Iron Man/Tony Stark (Robert Downey Jr.), Captain America/Steve Rogers (Chris Evans), Nebula (Karen Gillan), Rocket (voiced by Bradley Cooper), Ant-Man/Scott Lang (Paul Rudd) and Black Widow/Natasha Romanoff (Scarlett Johansson). (Courtesy of Film Frame ©Marvel Studios 2019) Keep reaching The list of box office records broken by “Avengers: Endgame” already stretches as long as the movie’s post-credits. “Highest Opening Day of All Time,” “Fastest Film to Hit $100 million at Box Office,” “First Film to Make $1 Billion During Opening Weekend,” and “Fastest Film to Reach $2 Billion” are among its many achievements, as reported by Complex in May. Despite sitting on that hill of success, Marvel Studios is still reaching for the crowning achievement of its 11-year, 22-movie, superhero saga. When setting goals for our sarcoidosis management, we should adopt a similar approach. When we reach one goal, we should set another, and so on until we reach what we consider our crowning achievement. Only you can decide what that top goal is. The road may be long and difficult. But the only chance you have of reaching your destination is to do like Marvel and keep reaching. As Martin Luther King Jr. once said: “If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” *** 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 Marvel’s Rerelease of ‘Avengers: Endgame’ Is a Lesson in Perseverance appeared first on Sarcoidosis News. Link naar het originele artikel
  6. Joachim

    Sarcoidose Centra & Organisaties

    Onderstaand zijn de op dit moment bekende ziekenhuizen of organisaties waar men een bijzondere interesse heeft in Sarcoïdose; Sarcoidose.nl ILD Care Foundation WASOG Nieuwegein: St. Antonius Ziekenhuis Amsterdam: Amsterdam UMC Rotterdam: Erasmus MC Dordrecht: Albert Schweitzer Ziekenhuis Maastricht: Maastricht UMC Ede: Ziekenhuis Gelderse Vallei Den Bosch: Jeroen Bosch Ziekenhuis
  7. Laatste week
  8. People with sarcoidosis have a higher degree of physical inactivity compared with healthy individuals, a pilot study led by researchers from the King’s College London shows. Physical activity monitors, such as the accelerometer device ActivPal, can provide a unique perspective on the impact of sarcoidosis on patients’ function not captured by current clinical outcome measures, researchers suggest. Findings from the study, “Physical Inactivity in Pulmonary Sarcoidosis,” were published in the journal Lung. Studies have demonstrated that dyspnea (breathlessness), fatigue, and joint pain can have a severe impact on physical activity in sarcoidosis. Although those studies have used reliable, well-defined approaches such as the six-minute walk test (6MWT) or cardiopulmonary exercise tests to assess patient activity, these tools hold some limitations. Also, studies using regular activity measurements, such as steps per day to correlate exercise capacity with clinical outcomes, often fail to include a healthy control for comparison. So there is still limited understanding of how the disease affects a patient’s daily physical activities. To fill this knowledge gap, researchers conducted a pilot study in which people with pulmonary sarcoidosis and healthy volunteers used a device called a piezoelectric triaxial accelerometer to appraise physical activity. ActivPal is a device that can be worn daily and measures a range of physical activities. Researchers also compared the accelerometer’s collected data with participants’ outcome measured by 6MWT, lung function tests, fatigue levels, and health status, among other clinical parameters. The study enrolled 15 participants (mean age 52.7) with pulmonary sarcoidosis from a secondary care specialist clinic at King’s College Hospital, and 14 healthy age-, sex-, and weight-matched volunteers. All participants used the ActivPal device attached to their upper thighs for over one week, and were asked to respond to four questionnaires in which they reported their patterns of physical activity, fatigue, dyspnea, and global health status. Through ActivPal data, researchers found that both daily step numbers and stepping times were significantly lower in participants with sarcoidosis (mean 5,624 steps and 1.18 hours per day, respectively) compared with healthy controls (mean 10,429 steps and 1.97 hours per day). Sarcoidosis patients also showed reduced exercise capacity, with just 375 meters (0.23 miles) covered in the 6MWT compared with 487 meters (0.30 miles) of the control group. Further analysis showed a significant association between 6MWT and the number of daily steps determined by ActivPal. Vigorous physical activity was also found to be reduced among sarcoidosis patients compared with healthy participants. Only two (13%) participants with sarcoidosis had undertaken vigorous activity during the last seven days, compared with seven (50%) healthy controls. Of note, vigorous exercise reports also correlated with 6MWT distances. Self-reports revealed that the sarcoidosis group had on average more fatigue than the control group, which was also linked to the reduced time measured by ActivPal that the patients spent upright or standing per day. In general, patients who had better lung-specific health were found to spend more time standing or upright per day, while those with worse dyspnea scores were the ones who had a reduced number of sit-to-stand transitions assessed by the accelerometer. Lung health scores also correlated significantly with self-reported overall physical activity. “Physical activity monitors can provide a unique assessment of the impact of disease on function that is not captured by existing clinical outcome measures for sarcoidosis, and can potentially be used to assess response to therapy,” researchers said. “The mechanism for reduced physical activity in sarcoidosis is unclear but is likely to be multi-factorial and needs further study,” they concluded. The post Physical Activity Monitors Can Help Better Define Sarcoidosis’ Severity appeared first on Sarcoidosis News. Link naar het originele artikel
  9. Oral steroid use in patients with the inflammatory diseases polymyalgia rheumatica and/or giant cell arteritis significantly increased the risk of infection, and the risk increased with higher doses, found a study in CMAJ (Canadian Medical Association Journal). Link naar het originele artikel
  10. Eating a plant-based diet may be an effective treatment for Crohn's disease, according to a case study published in the journal Nutrients. Link naar het originele artikel
  11. Joachim

    How does your brain take out the trash?

    Until recently, no one knew how the brain removed waste. In 2013, the glymphatic system was discovered. Here, we discuss its role in health and disease. Link naar het originele artikel
  12. Some people find that eating gluten can trigger rheumatoid arthritis (RA) symptom flares. In this article, we discuss the link between gluten and RA, foods to eat and avoid, and when to see a doctor. Link naar het originele artikel
  13. Patients with psoriasis frequently use complementary or alternative therapies to treat their symptoms, according to survey results published by dermatologists from the George Washington University (GW) in the Journal of the American Academy of Dermatology. Link naar het originele artikel
  14. Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic, integrated-care approach by 2030. The payoff will include better care and less strain on patients and caregivers, said Raquel Castro, the Paris-based organization’s social policy director. She spoke to BioNews Services, which publishes this website, at a May 17-19 conference in Bucharest, Romania. Dorica Dan, president of the Romanian National Alliance for Rare Diseases. (Photo courtesy of Dorica Dan) By holistic care, Eurordis means treatment, healthcare and a range of support beyond the social services traditionally associated with rare diseases. This includes programs to help patients lead fuller social lives, take advantage of educational and job opportunities, and deal with the depression that often accompanies poor health. The Eurordis integrated-care initiative — seven years in the making — is spelled out in a position paperthat includes 10 broad recommendations and dozens of more specific suggestions for European governments, treatment providers, social service agencies and others. “People living with rare diseases and their families played a crucial role in shaping the position paper by giving us their thoughts and ideas all along the way,” Castro said. “This is about reorganizing and connecting elements that already exist to achieve integrated care, not necessarily starting new programs.” A holistic-care linchpin that Eurordis already has helped start is RareResourceNet. These one-stop treatment and services facilities across Europe include the NoRo Centerin predominantly rural northern Romania. “The centers offer specialized health-care and rehabilitation services,” said Dorica Dan, president of the Romanian National Alliance for Rare Diseases and the driving force behind NoRo. “They also give patients capacity-building help by providing them with information and skills in disease and life management.” Tetraparesis patient Mierea Jessica, 14, has benefited from holistic care at Romania’s NoRo Center. (Photo courtesy of NoRo Center) Eurordis based some of its recommendations on knowledge it has gleaned from resource centers and other integrated-care approaches it has tried. One experiment, the INNOVCare Project, was a nine-month pilot program in Romania’s Salaj region in 2017 and 2018. The idea was to have a single person — a case manager — arrange all of a patient’s treatment healthcare, rehabilitation, insurance and other support needs. According to a post-experiment patient and caregiver survey, the case-manager approach provided 121 patients and caregivers with more information, helped them do a better job of managing care by themselves, decreased caregivers’ burdens, and improved coordination of care between providers and support agencies. Viorel and Maria Muresan, a married couple with Charcot-Marie-Tooth disease in the Romanian town of Cizer, said their case manager helped them understand which services they were entitled to. That manager also eliminated insurance and bureaucratic obstacles. “When you don’t know where to seek help, it is important to have a person who can guide you,” said Viorel, 40. Added Maria, 33: “Our case manager helped us so much that I think all rare-disease patients should have one.” Among the Eurordis position paper’s recommendations: European countries should take steps to coordinate the rare disease work of government agencies that oversee healthcare, social services, education, work-force participation, and research to provide patients and caregivers with better treatment and support. National governments and EU-wide agencies should commit to fund holistic, integrated-care programs for rare disease patients. European countries should ensure that rare patients who want to work can find full- or part-time jobs. This also means offering them reasonable workplace accommodations, flexible work arrangements, and leaves of absence when necessary. Rare disease patients and caregivers should have access to a quality education, social workers, psychological supportand respite care services. Patients and caregivers should receive an annual mental health assessment to prevent burnout and depression. Countries that don’t have a rare-disease phone helpline should create one. Those that do should ensure it has adequate funding to continue operating. Castro said the paper summarizes the quest in one simple but eloquent sentence: “People living with a rare disease should be integrated into a society that leaves no one behind.” The post Eurordis Unveils Integrated-care Initiative for Rare Disease Patients appeared first on Sarcoidosis News. Link naar het originele artikel
  15. Joachim

    Can people die from rheumatoid arthritis?

    A person cannot die directly as a result of rheumatoid arthritis, but the condition can lead to life-threatening health complications. Learn about the factors involved and methods of preventing complications here. Link naar het originele artikel
  16. Earlier
  17. Research led by the University of Birmingham has found re-purposing already existing drugs or combining therapies could be used to treat patients who have difficult to treat autoimmune diseases. Link naar het originele artikel
  18. In 2012, Professor Jeroen Raes (VIB-KU Leuven Center for Microbiology) launched the Flemish Gut Flora Project. Sequencing fecal samples of over 3,000 healthy volunteers, Prof. Raes and his team defined the boundaries of a normal, health-associated gut microbiota. Next, the team turned to patient groups to identify microbiome alterations associated with diseases. Recently, they described the so-called B2 enterotype, deficient in some anti-inflammatory bacteria. Today, their results on the high prevalence of this particular enterotype across multiple diagnoses are published in Nature Microbiology. Link naar het originele artikel
  19. Affecting around 115,000 people in the UK alone, Crohn's Disease is a lifelong condition which sees parts of the digestive system become inflamed. There is no precise cure and causes are believed to vary. But one indicator of the condition—an abnormal reaction of the immune system to certain bacteria in the intestines—has had new light shed on it thanks to scientists at the University of Plymouth. Link naar het originele artikel
  20. People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most lawmakers aren’t experts in even one well-known disease — let alone the world’s estimated 7,000 rare disorders. So how does the rare-disease community help them decide what policies to adopt? Sanda Courbier, senior manager of the Rare Barometer Program. (Photo courtesy of Eurordis) One way is to survey patients and caregivers about their needs, then share the results with officials so their decisions can be based on facts rather than conjecture. For the last three years, Eurordis-Rare Diseases Europe— a Paris-based alliance of more than 800 patient organizations — has conducted the Rare Barometer Program, whose reports feature straightforward, reader-friendly analyses, and colorful graphs and charts. More than 3,000 people, 60% of them patients, typically take part in these surveys. They represent about a third of the 10,000 patients, family members, and caregivers now in the Eurordis database. Senior manager Sandra Courbier and research executive Erwan Berjonneau spoke about the program with BioNews Services— which publishes this website — at the Eurordis annual membership meeting, held recently in Bucharest, Romania. “A number of politicians have quoted the results of our surveys” in pushing for specific rare disease policies, Courbier said. The reports also help researchers understand how patients want to participate in studies, including clinical trials, while raising public awareness of rare diseases. Europeans make up the vast majority of the 10,000 people in the database, led by France (1,400) and Germany (1,000). The U.K., Spain and Italy each have 800 patients in the database. Non-European countries, such as the U.S., also are represented. Courbier said Rare Barometer has put stringent privacy protection controls in place. “All of the information shared with us is confidential,” she said. “It is used to create a collective analysis, and is not shared with anyone other than the Rare Barometer team.” Eurordis also has developed relationships with universities conducting similar research. For example, she said, it is teaming up on a survey with Cardiff University in Wales. To ensure the widest possible dissemination of results, Rare Barometer publishes its surveys and reports in 23 languages. And while it covers all rare diseasesrather than selected ones, the team will break out findings on a particular disorder if a member organization requests it. It also will break out results by country, age, and other factors if a member asks for more detailed analysis. The team conducts two to three surveys per year. One in 2017 focused on the day-to-day challenges of rare-disease patients and caregivers. One of the biggest challenges, the survey found, is an often-experienced one: requirements that patients visit multiple different healthcare, social service, and local support facilities in a short time period. Other challenges include mental health issues, and achieving a balance between work and family life. Erwan Berjonneau, research executive of the Rare Barometer Program. (Photo courtesy of Eurordis) A 2018 survey on attitudes of rare-disease patients toward participating in research yielded intriguing results, including the following: 37% of people with rare diseases have participated in research The main reason for participating is the excellent working relationship they develop with researchers They want to help scientists discover treatments and therapies Patients see a lack of public funding — rather than a lack of pharmaceutical industry financing — as the main obstacle to research on rare diseases A number of Eurordis members consider the surveys such a good awareness-building tool that they put Rare Barometer graphs and charts on their websites or social-media platforms, Courbier said. Berjonneau remembers learning from an email a year ago that the surveys not only inform those in the rare disease community, but also comfort them. The message was from a British woman who had lost her job because of her rare disease. When she read a Rare Barometer survey showing that this happens to many people with rare diseases, she understood that others were in similar situations, Berjonneau said. “Once she realized she wasn’t the only one who has faced this problem, she said she didn’t feel so alone,” he said. The post ‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy appeared first on Sarcoidosis News. Link naar het originele artikel
  21. Joachim

    Voorstellen Moontje

    Hi Moon, Idd die Sil2-R zou je gewoon via de longarts moeten kunnen aanvragen. Gaat via een bloedafname net zoals de ACE. ACE hoeft niet altijd verhoogd te zijn maar is samen met de Sil2-R een goede indicator. Vroeger prikte ze alleen de ACE. Vandaar zou ik, als je toch bloed laat prikken BEIDE laten onderzoeken, zodat je de beide waarden hebt. Ik zou zo even niet weten waar je nog meer op geprikt moet worden voor specifiek Sarcoïdose. Je hebt namelijk helaas al zo'n lang traject achter de rug dat het meeste, naar mijn inziens, wel geprikt zou moeten zijn. Wellicht dat iemand anders hier op het forum nog advies heeft, over wat nog te onderzoeken. Chapeau iig dat je actief blijft om mogelijkheden te onderzoeken, jouw kwaliteit van leven te verbeteren. Groetjes, Joachim
  22. Moontje

    Voorstellen Moontje

    Hallo Joachim, hartelijk dank voor jouw reactie! ik dacht eerst dat mijn bericht niet geplaatst was, mijn Ipad sloeg vast, en zag nadien niet mijn bericht verschijnen. Maar blijbaar dus toch goedgekomen. Het advies dat je me geeft, kan ik wel wat mee, maar kan die lange afstanden niet meer maken. wil ook niet iedere keer iemand moeten vragen om met mij mee te gaan. heb net een heel cirquit Radboud achter de rug. maar Afgelopen week eerste bezoek longarts. hij beluisterde mijn longen, en vervolgens kon ik via eerste hulp voor een ct scan, spirometrie, longfunctie etc. gelijk weer terug voor de uitslag, matglas op ct longen, gaswisseling niet goed, dus emfyseem. vorig jaar was alles nog goed op de fibrotische afwijkingen na dan. mijn ziektebeeld verbloemd het andere gerommel in mijn lijf. want dunne vezel neuropatie heb ik, geen enkele twijvel. enkel die neurologen hier op het streekziekenhuis, dat word hem niet, nooit van mijn spierziekte gehoord, zijn lymedoof, en kijken je niet eens aan tijdens het gesprek. de laats recente neuroloog, pakweg 2 maand geleden, eerste consult met de beste man...keek me niet aan, heeft me niet onderzocht, was toch bij het Radboud?...laat ze het daar maar uitzoeken. en dat terwijl mijn klacht daar los van stond, en juist de neuro van het Radboud mij voor die klacht naar neuro hier stuurde, juist omdat deze klacht losstond van hun onderzoek aldaar. niet mee te praten zo star. kan ik die Sil2-R ook vragen via mijn longarts? ace heb ik ooit al eens zelf aangekruist, deze was nog binnen de waarde. Hoort die altijd verhoogt te zijn? En waar zou ik eventueel nog meer op kunnen laten prikken? ik heb hiernaast dus ook verscheidene vergrote lymfeklieren, enkel niet bij mijn longen. groetjes Moon.
  23. A research group from MedUni Vienna and CeMM Research Center for Molecular Medicine of the Austrian Academy of Sciences has discovered a new mechanism by which cells communicate in inflammatory processes. This involves endogenous mitochondria released from white blood cells turning into initiators of inflammation. It is as if friends turn into enemies. The results have now been published in the journal Circulation Research. Link naar het originele artikel
  24. Joachim

    Are we using biologic therapy properly?

    The introduction of infliximab (Remicade), the first biologic therapy approved for the treatment of inflammatory bowel diseases (IBD), did not result in lower rates of hospitalizations or intestinal surgeries among patients living with IBD in Ontario, according to a study published by authors from several Canadian hospitals and ICES in the journal Gut. Link naar het originele artikel
  25. Peptides that mimic the function of HDL cholesterol, which has been dubbed "good cholesterol," can treat the underlying inflammation associated with inflammatory bowel disease, or IBD, according to new research in mice. The same work revealed new details on how IBD can develop and what other types of drugs may work to treat the disease. Link naar het originele artikel
  26. Secondary progressive multiple sclerosis (SPMS) is a later stage of multiple sclerosis. This article provides an overview of the condition, including its symptoms, diagnosis, and treatments. Link naar het originele artikel
  27. Changes in the gut microbiome have long been linked with Crohn's disease and other forms of inflammatory bowel disease (IBD), but the biology behind those links has remained murky. Researchers at the Broad Institute, Massachusetts General Hospital (MGH), and Harvard Medical School (HMS) have now found that one bacterium, Ruminococcus gnavus, which is associated with Crohn's disease, releases a certain type of polysaccharide (or a chain of sugar molecules) that triggers an immune response. Link naar het originele artikel
  28. We often hear that consuming protein may benefit people hoping to lose weight or build muscle mass. Now Tufts researchers have found that protein intake may also be associated with slower progression of age-related inflammation. Link naar het originele artikel
  29. (HealthDay)—Higher sun exposure in the previous summer or winter is associated with a lower risk for having pediatric inflammatory bowel disease (IBD), according to a study recently published in the Journal of Pediatric Gastroenterology and Nutrition. Link naar het originele artikel
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