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  1. Laatste week
  2. Second opinions are a welcome hope! I received one for the first time this week, and the experience left me questioning my decision. Earlier this year, my primary pulmonologist and I agreed that I should seek a second opinion on my lung health. Pulmonary sarcoidosis is a very tricky condition. I can tell you from firsthand experience not to underestimate breathing and lung health. You really don’t want to be reminded of their importance. I reached out to Penn Medicine’s Harron Lung Center. The center is well-known, so hopefully it can help me on my journey. When I arrived for my initial consultation, the facility looked like a high-tech campus. I was impressed, to say the least. I made my way to the lung center thinking all sorts of things. I was trying not to get excited and overwhelmed before meeting the doctor. My breathing became a little labored, but I attributed that to nerves. It’s not easy trying to calm yourself down when you’re unsure what you’re anticipating. Just go with the flow My consultation was with a lung transplant doctor. I’d be lying to say I wasn’t terrified going into this meeting. It seemed like the longer I waited for the doctor, the more nervous I became. Time wasn’t on my side. I met with one of the coordinators and everything went well. She reviewed my medical records and we went over a lot of my medical history, sort of filling in the blanks. After I met with her, I finally met with the doctor. She seemed very pleasant. She asked a few questions, and then went into detail about the transplant program. During our meeting, I couldn’t help but to pay attention to her demeanor. I thought maybe I was overly nervous about meeting a new doctor at a new facility. I didn’t feel as relaxed as I normally am. The doctor reviewed my medical history from the past three years and mentioned a few tests I would probably have to take. I told her I had already done the tests she mentioned at the beginning of the year. As she reviewed those tests further, she said I would probably have to repeat all of them. My heart started racing because I kept thinking about the 50-plus blood tests I did in January. I wondered, “Was this a good idea?” As we continued to chat, I managed to make her laugh a bit. Believe it or not, that small reaction relieved a lot of the tension I was feeling. When I meet with my other doctors, I make a point to joke with them or to make them laugh. By nature, I love to make people laugh. It helps in whatever situations I’m facing. My doctors’ appointments are more like short social meetings with old friends. I’ve developed pretty cool relationships with them. I share my homebrew with one of my pulmonologists and one of my respiratory therapists. The therapist has now started homebrewing. The lung transplant doctor and I finished up, and I was ready to go. Overall, it wasn’t a bad meeting. It all came down to wanting to get a second opinion but not knowing what to expect. I can add this adventure to my list of life experiences. Growing up, my brother and I would always prank each other. The victim would declare in defeat, “Expect the unexpected.“ I didn’t know what to expect that day, but I didn’t expect to have an advantage. I’m now in the care of two recognized lung centers. I can only believe that things will get better for me. I will meet with my pulmonologist this week and tell him how my initial visit went. Although the whole process scares me, it’s time to put fear back in its place. Expect the unexpected … expect to be better. *** 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, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Expect the Unexpected When Receiving Second Opinions appeared first on Sarcoidosis News. Link naar het originele artikel
  3. Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help accelerate research, during a presentation titled “Take the Leap! Forming a 501(c)(3) & Establishing a Disease Registry to Advance Your Rare Community.” The webinar was hosted by the National Organization for Rare Disorders (NORD) as part of its RareLaunch program, which provides training and support to those interested in starting 501(c)(3) nonprofit organizations or expanding research. Keys to success NORD’s roots are grounded in the power of capacity building and community engagement, according to Pamela Gavin, NORD’s chief strategic officer. The nonprofit was first formed as a coalition of rare disease patients and family members who helped pass the Orphan Drug Act of 1983, which incentivized biotech companies to invest in research and therapies to treat these groups. Fast forward nearly 40 years, and the effects of the legislation are still benefiting rare disease patients. Orphan products accounted for 44% of the total new therapies in 2019, Gavin said. She emphasized that there’s still more work to do and an opportunity for new nonprofits to pick up some of the slack as science progresses. “Community engagement and capacity building are as important today as they were back then,” she said. “We have greater opportunity to achieve more, more quickly, more effectively, and of course, more efficiently than we’ve done in the past.” Some of the challenges currently faced by the rare disease community include access to funding for research, lack of scientific knowledge, and problems with data standardization and sharing, Gavin said. When people think of starting a nonprofit, they often consider the business side first, said Colleen Brunetti, chair of the board of trustees for the Pulmonary Hypertension Association (PHA): “But what must come first is the heart and soul of it all — your ‘why’ for wanting to start a nonprofit — and maybe your ‘who,’ the person you love with a rare disease.” PHA got its start in 1991 when four women with pulmonary hypertension (PH) connected around a kitchen table. They eventually established a medical board and spearheaded a conference in 1994, bringing together doctors and indirectly heralding the discovery of the first PH-associated gene, according to Brunetti, who is the second PH patient to chair the board of trustees. Both the board and the conference were revolutionary ideas at the time, but they proved successful and remain key components of the organization today. Brunetti also pointed to other elements of PHA’s success, including finding new opportunities for engagement, encouraging new ideas and directions, and developing the talent of the people involved in the organization. 501(c)(3) status A common theme throughout the webinar was the importance of attaining 501(c)(3) status. The primary benefit of the designation is, of course, the tax incentives, but having a 501(c)(3) status can also give an organization a mark of legitimacy and transparency to potential donors, Gavin said. Ultimately, Brunetti added, authenticity matters. Gavin spoke about the difficulties of raising money without first having the proper infrastructure and governance in place. Attaining 501(c)(3) status can be a critical step in this process. For example, in its third year as a 501(c)(3), PHA was able to raise more than $1 million, Brunetti said. In addition, the designation can make it easier to support research and help lower the risk of early-stage therapy development, said Jessica Bohonowych, PhD, associate director of research programs at the Foundation for Prader-Willi Research. Companies will come and go, she added, but foundations tend to stick around for a lot longer and are driven by patients over corporate interests. Patient registries Patient registries can also play an important role in gathering data and advancing research. For example, PHA has launched a patient registry focused on collecting data to identify trends and patterns that may help determine the best treatments. The registry has enrolled more than 1,200 patients so far. Bohonowych also spoke of her foundation’s Global PWS Registry, which was created in 2015 with the goal of capturing the high variability of Prader-Willi syndrome from patient to patient. She likens the community to a quilt and personal stories to patches. “We want every single patchwork to be filled,” she said. Prader-Willi syndrome is a rare genetic condition that affects the function of a brain area called the hypothalamus, responsible for regulating dozens of systems in the human body. While scientists have narrowed the genetic cause of the disease to chromosome 15, the pathway is not completely understood, and no cure exists. The PWS registry also serves as a “matchmaking service” to help match patients to clinical trials for which they meet the eligibility criteria. Now, in the fifth year of the registry, clinicians are using the database as a research tool, and sponsors have approached the foundation for long-term natural history studies, which follow a patient through the entire course of the disease. The foundation has also collaborated with Levo Therapeutics to build a survey on anxiety and distress as a secondary goal for a Phase 2 clinical trial. It was a step-by-step process to get this far. In its first year, the foundation focused on sharing the data with its patients in the form of infographics and webinars. Once interest in the registry increased, clinics and researchers around the country began comparing their findings with existing patients. Future goals include conducting whole genome sequencing, which could then be linked to registry data, developing a clinical portal, and using the registry for post-approval studies, once a therapy is approved. More information The first step to starting a nonprofit is to create a plan, and “this webinar series is a tremendous resource and a fantastic first step in that process,” Bohonowych said. For those interested in learning more, registration is now open for RareLaunch’s more in-depth workshops, one on Dec. 2 about forming a foundation and another on Dec. 3 about being research-ready. The post Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry appeared first on Sarcoidosis News. Link naar het originele artikel
  4. The Foundation for Sarcoidosis Research (FSR) is launching a series of mindfulness and meditation workshops — all as free, live webinars — to support people with sarcoidosis and those caring for them. The workshop series will focus on discussing the physical and mental benefits of meditation and mindfulness, as well as the negative effects of stress on a patient’s health. During the workshops, individuals with sarcoidosis and their carers will have the chance to learn techniques for improving meditation and mindfulness, and how to implement such strategies into their own routine self-care. The webinars will be led by Susan D’Agostino, a retired registered nurse and certified mindfulness and meditation instructor, who also has sarcoidosis. D’Agostino, who is certified by the McLean Meditation Institute, worked for more than 40 years in the healthcare industry. Always interested in learning more about the mind-body connection, particularly how one’s mind may influence the body when it comes to preventing or recovering from an illness, D’Agostino pursued the McLean certification as a way to continue to help others. During the workshops, D’Agostino will teach the participants meditation and mindfulness techniques — which she herself uses on a regular basis — to aid them in improving their own health. The workshop series will be divided into four sequential, live video sessions, each beginning at 10 a.m. CST and lasting 75 minutes. Because the webinars are sequential, participants must have already completed the previous sessions before gaining access to a more advanced workshop. The first session, titled “Mindfulness and Meditation for Health and Well-being,” will be held this Saturday, Nov. 21. It will focus on explaining what mindfulness and meditation are, as well discussing the most common misconceptions about such practices. D’Agostino also will address the negative effects stress may have on a person’s mental and physical health. During this introductory session, the participants will have the opportunity to learn how to meditate. “Physical Benefits of Mindfulness and Meditation,” the second workshop, will be held on Saturday, Nov. 28. This session, which will end with a meditation practice, followed by a question-and-answer period, will focus on the physical benefits of meditation in the context of sarcoidosis. The third session will be held next year, on Saturday, Jan. 9. In that session, titled “Mental Benefits of Mindfulness and Meditation,” participants will discuss the meaning of neuroplasticity — the brain’s ability to adapt or rewire itself to preserve function following damage — and explore how mindfulness and meditation techniques may help memory and cognition. Like the previous session, this one also will end with a meditation practice, followed by Q&A. The last session — “Emotional Benefits of Meditation” — will be held on Saturday, Jan. 16, and focus on how meditation and mindfulness techniques can be used to alleviate nervousness, anxiety, and fear. During this fourth session, the participants will learn how to implement these techniques in their daily lives. As with the previous workshops, D’Agostino will end the session with meditation practice and a Q&A. Registration in the workshops is free of charge and can be done here. Those wishing to participate in the series only need to register once, and not separately for each session. While participants can register after the workshops start, they will have to watch recordings of the previous sessions before being able to access the next available live session. The post FSR Offers Patient Webinar Workshops on Mindfulness, Meditation Techniques appeared first on Sarcoidosis News. Link naar het originele artikel
  5. An international team of researchers have uncovered a drug-like compound that blocks a crucial inflammatory pathway, potentially paving the way for a new treatment for a host of diseases—including COVID-19. Link naar het originele artikel
  6. Joachim

    A Healthy Streak I Would Like to Continue

    Right around this time last year, I was cobbling together homemade chicken soup to get rid of a cold. My victory was short-lived, because a second wave struck a week later. That’s long been my M.O. — battling an endless series of colds, viruses, and sinus infections. That’s why, as others rush to get back to life as it was, I’m thinking about holding on to some of life as we know it now. It’s been eight months since I’ve had a cold or a sinus infection. I know it’s not nearly as impressive as “How I Met Your Mother” character Ted being “vomit-free since ’93,” a joke explained by Screen Rant. But, as someone seemingly lacking a robust immune system, it’s incredible. Avoiding illnesses make days with sarcoidosis seem that much lighter. I want to continue my current healthy streak for as long as possible. So, I’m keeping some recent changes in place even after the pandemic ends. I’ve always tried to steer clear of sick people and ward off germs, a lesson driven home by my love-hate relationship with prednisone. This year has provided a permanent excuse to avoid unwanted handshakes and hugs, which the Mayo Clinic reports are several ways the common cold spreads. Hey, stare all you want — masking up when it will help prevent illness is a practice I’m holding on to. I used to feel like masks were a flashing beacon announcing my vulnerability. But thanks to uniform use, they have become an extension of style to add a layer of protection. Gone, too, are my days of lingering in close contact with strangers during the height of flu and cold seasons. I plan to stay 6 feet away and shop as I shop now: quickly and with as few trips as necessary. I’m also hanging on to my habit of removing my shoes before entering my home and treating everything potentially touched by others as contaminated. Doing so serves as a constant reminder to combat germs by taking steps such as hand washing and wiping down surfaces. We’ve been given a huge helping hand in staying well this year. More employers have embraced working remotely, people must wear masks in public, and remaining socially distanced is commonplace. But when safeguards are lifted, we will face the same old threats we always have. In an online survey last year of 2,800 workers in 28 U.S. cities: 90% of professionals admitted going to work with cold or flu symptoms 33% said they always go to the office, even if they’re sick 54% said they go in sick because they have “too much work” 40% said they go in sick because they don’t want to use sick time I can’t change other people’s behaviors. But this year has made me realize that cycles of sickness are a norm I can change. *** 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. Brewing kindness: A New York brewery has debuted a limited-edition beer to help hospitality workers left jobless by the pandemic, Newsday reported. A four-pack of the 16-ounce India pale ale, called “Hopspitality,” costs $20. It’s a collaboration of the Long Ireland Beer Co. in Riverhead, radio station WBAB/102.3 FM, and the Long Island Hospitality Association trade group. Spinning tales: If you can’t imagine being entertained by wool, you aren’t among Washington-based artist Andrea Love’s 500,000-plus Instagram followers. Wool animations of lemons squirting juice, a stove top heating, and breakfast being prepared are among the many short films Love has produced in her basement studio, as Colossal reported. You can view Love’s creations on Instagram and on AndreaAnimates.com. *** 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, and are intended to spark discussion about issues pertaining to sarcoidosis. The post A Healthy Streak I Would Like to Continue appeared first on Sarcoidosis News. Link naar het originele artikel
  7. Earlier
  8. Managing the activity of the BCAP protein could help the body repair intestinal tissue from damage caused by inflammation, according to a new study led by experts at Cincinnati Children's. Link naar het originele artikel
  9. Joachim

    Chronic inflammation causes a reduction in NAD+

    NAD+ (nicotinamide adenine dinucleotide), a key metabolite central to an efficient and healthy metabolism, declines with age. This previously unexplained phenomena is associated with numerous age-related diseases and has spawned the development of many nutritional supplements aimed at restoring NAD+ to more youthful levels. Publishing in Nature Metabolism, researchers at the Buck Institute have identified chronic inflammation as a driver of NAD+ decline. They show that an increasing burden of senescent cells, which is also implicated in the aging process, causes the degradation of NAD via the activation of CD38 (cyclic ADP ribose hydrolase) a protein that is found on the cell membranes both inside and on the surface of many immune cells. Link naar het originele artikel
  10. Two independent clinical studies—one by researchers at the Center for Cell-Based Therapy (CTC) in Ribeirão Preto, state of São Paulo (Brazil), on the monoclonal antibody eculizumab, and the other by scientists at the University of Pennsylvania in Philadelphia (U.S.) on an experimental drug called AMY-101—observed a significant anti-inflammatory effect that contributed to a faster recovery by severe COVID-19 patients. The results of the two studies, which set out to compare the compounds' therapeutic potential, are reported in an article published in Clinical Immunology. Link naar het originele artikel
  11. Corticosteroids, a type of anti-inflammatory medication, is the most prescribed treatment for people with sarcoidosis, a study in a U.S. population shows. Also, the study found, a small percentage of these patients are receiving biological therapies (those using compounds derived from living organisms), despite not being approved in the U.S. for the treatment of sarcoidosis. The study, “Treatment of Sarcoidosis in U.S. Rheumatology Practices: Data from ACR’s Rheumatology Informatics System for Effectiveness (RISE) Registry,” was published in the journal Arthritis Care Research. There are several treatment options available for sarcoidosis, including corticosteroids and non-steroid therapies. The latter comprise disease-modifying anti-rheumatic drugs (DMARDs), which can be conventional (cDMARDs), biological (such as tumor necrosis factor inhibitors or TNFi) and targeted synthetic (tsDMARDs). However, treatment for sarcoidosis is not currently standardized due to the high variability of the disease and to the lack of non-steroid therapies approved by the U.S. Food and Drug Administration (FDA). In fact, the number of biological therapies prescribed to people with sarcoidosis in the U.S. has never been explored. Since there is no clear notion of the medications used by this patient population, there are areas for which therapeutic needs are still unidentified. To address these issues, a team led by researchers at the University of California San Francisco reported all treatments prescribed in a sarcoidosis patient cohort — the Rheumatology Informatics System for Effectiveness (RISE) registry — and evaluated the differences in prescriptions across several healthcare services. The “RISE registry represents an estimated 32% of the U.S. clinical rheumatology workforce,” the researchers wrote. A total of 3,276 sarcoidosis patients, age 18 or older (mean age 59.1 years) were included in the study. The team analyzed all therapies prescribed in 184 healthcare services, particularly systemic corticosteroids, cDMARDs, biologic DMARDs (including TNFi and non-TNF-i) and tsDMARDs. Results showed that corticosteroids, including prednisone and other oral and intravenous steroids, were prescribed to 59.3% of patients. Of these, a quarter (24.7%) received prolonged therapy (daily 10 mg or greater for at least 90 days) and 18.2% received monotherapy (without any DMARDs). Recent guidelines suggest that a daily dose of prednisone of 10 mg daily is quite far from the optimal dose and is associated with significant side effects. Therefore, “the finding that a quarter of patients exceed this dose for a prolonged period highlights the need for additional and more effective therapies to be developed in this disease,” the team wrote. Researchers also found that about 12.1% of the patients were prescribed one or more biologic or tsDMARD, with TNFi being prescribed most (10.9%). This result is slightly higher than previously reported “perhaps because patients had more musculoskeletal complaints or because they were all seen by rheumatologists, who were comfortable prescribing these drugs,” researchers wrote. Regarding the type of healthcare services, among high-volume healthcare practices (with 30 or more sarcoidosis patients) there was a wide variation in the use of biologics — ranging from 15.6% to 69.2% of patients. Infliximab was the most common prescribed biologic (zero to 40% of patients). Likewise, non-TNF biologics were used by zero to 50% of patients, again showing a wide variation in their prescription. According to the researchers, this variation might be explained by several factors such as race, insurance status, disease manifestations or severity, or even clinicians’ preferences. Since sarcoidosis is a rare disease, patients may seek healthcare professionals from different fields, including neurology, dermatology, pulmonology and rheumatology. Thus, the treatments adopted by these specialists may be quite variable, even among those with the same specialty. “We found wide variations in the patterns of biologic therapies used by U.S. rheumatologists to treat sarcoidosis, likely reflecting the lack of standardized treatment recommendations for this disease,” the team wrote. Researchers emphasized the need for further clinical studies evaluating the effectiveness and safety of biological therapies in people with sarcoidosis. “We found a significant number of patients were receiving chronic glucocorticoids [corticosteroids] and a clinically important fraction were receiving biologics. With no FDA-approved drugs available for extrapulmonary sarcoidosis, our findings highlight the need for a greater focus on developing standardized treatments for patients with this disease,” researchers concluded. The post Corticosteroids Prescribed Most for Sarcoidosis in US, Study Shows appeared first on Sarcoidosis News. Link naar het originele artikel
  12. Joachim

    Medical Marijuana Costs May Make You Think Twice

    Last week, voters successfully nudged a handful of states into expanding opportunities to buy marijuana legally. But there are a few things you should know before leaping into medical marijuana. I was excited when my home state of Pennsylvania finally opened the door to medicinal uses two years ago. Pain has been my daily companion for several years, and I’ve been trying to eliminate it. But getting state-certified relief hasn’t been as easy as I thought. For starters, get ready to pay — a lot. I registered for my state’s program in February 2019, which is the first step on the path to certification. I quit my pursuit two months later. It wasn’t because I couldn’t qualify but because the numerous physicians I contacted charged exorbitant fees to do so. One area practice told me there was an annual membership fee of more than $1,000 to become a patient of the practitioner. Afterward, I would have to hand over hundreds more for medical marijuana program certification. Another charged $375 for the initial visit and required patients to return every three months and pay $98 for recertification. The necessary consultations are not covered by health insurers, so it pays to shop around. In my case, it paid to wait, because my primary care physician joined the ranks of those providing certifications and I ended up paying $150. Step two: get ready to pay more After being approved this summer, I had to pay the $50 annual fee for a medical marijuana card. It’s required to get into dispensaries and make purchases. Once again, you will not get any help from health insurers. You can leave your credit cards at home because it’s cash only for products. It ain’t cheap. A survey conducted in January 2020 found that nearly 59% of medical marijuana users in the Keystone State reported forking over $200 or more each month on medical marijuana products. Following is a complete breakdown of what the 3,201 respondents said they spent on average each month: 15.98%: Less than $100 25.06%: $100-$199 19.99%: $200-299 21.29%: $300-$499 14.01%: $500-$1,000 3.67%: Over $1,000 The top reason respondents (61.11%) said they stopped using medical marijuana was because they couldn’t afford it. No. 2 was because they (44.49%) couldn’t find a consistent supply of the product(s) they needed for their condition. High prices and limited options were also the gripes of those surveyed in neighboring Ohio, the Cincinnati Enquirer reported. There was a wide variety of dry leaf and vaporization cartridges and pods to choose from at the dispensary I visited. But there was a very limited selection of products that didn’t need to be inhaled, which I preferred because of my pulmonary sarcoidosis. Trial and error Be prepared to explore. You’ll find products containing various levels of THC, which produces a “high,” and CBD, which is not psychoactive. Ohio Marijuana Card explains the differences and benefits. Determining what works best for your needs and at what proportions will involve some trial and error. I’m still early in the process. I’m thankful to be among the more than 3000,000 Pennsylvania has approved to buy medical marijuana. But given the necessity of spending hundreds annually just to access cash-only products, I wonder if cost will drive me away from any health benefits, too. *** 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. Not your average bookshelves: If you collect literary works, BuzzFeed staff wrote about a cool way to liven up your shelves: book nooks. The shelf inserts fit between books, providing a diorama of scenery inspired by stories and ordinary life. “Harry Potter,” “Blade Runner,” and “Star Wars”-themed book nooks are among 14 shared by BuzzFeed. Enjoy! The Oreos are safe: There was little chance that an asteroid would strike the planet this month, but if it did, Oreo cookies were safe. Nabisco has a stash of the iconic cookies, their secret recipe, and powdered milk in a newly-built vault, Nerdist reported. The Global Oreo Vault is asteroid-proof and located in the permafrost of Norway. *** 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, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Medical Marijuana Costs May Make You Think Twice appeared first on Sarcoidosis News. Link naar het originele artikel
  13. A study comparing life expectancy of people with inflammatory bowel disease (IBD) and without found that, while life expectancy increased for both groups, people with IBD generally died sooner. The study is published in CMAJ (Canadian Medical Association Journal). Link naar het originele artikel
  14. The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases. “The RareLaunch program is central to NORD’s mission and history — community engagement and capacity building are in our DNA,” Pamela Gavin, NORD’s chief strategy officer, said in a press release. “Our organization was formed through a grassroots advocacy campaign to bring rare disease patients and families together to fight for a brighter future,” she said. That was in 1983, when a small group of patient advocates launched a coalition, now NORD, to unify their voices and generate support for what would become the Orphan Drug Act. “Although the means by which we connect and communicate have changed since 1983, the need to help foster the creation of even more disease-specific patient organizations and support therapeutic research remains,” Gavin said. “Through RareLaunch, NORD provides skills and tools to help make that progress a reality.” The first workshop, called “Forming a Foundation,” will take place on Dec. 2 from 1-5 p.m. ET. This workshop will provide caregivers, patients, and advocates with assistance for overcoming any obstacles to starting a non-profit. For people already involved in non-profits, the workshop will offer aid in building capacity, implementing good governance practices, and ensuring sustainable growth. It will feature authorities in governance, as well as people who have started their own rare disease non-profits, who will share their experiences. The second workshop, dubbed “Research Ready,” will be held Dec. 3 from 1-5 p.m. ET. In this session, experts will provide guidance on establishing and funding a research program, including advice on collaborating with researchers and with industry stakeholders. The aim is to better equip non-profits to support research into the specific disease for which they’re advocating. This workshop will feature a keynote from Christopher Austin, MD, director of the National Institutes of Health‘s National Center for Advancing Translational Sciences (NCATS). According to NORD, there are around 7,000 known rare diseases. Of these, it is estimated that over half lack organized representation or support, which makes it difficult for people with these diseases to make connections and get reliable information. NORD’s RareLaunch program was started with two main aims: to make it easier for people in rare disease communities to start non-profits, and to empower existing non-profit organizations to more effectively engage with research. Registration for the RareLaunch workshops can be found here; individuals can attend one or both free sessions. The workshops are funded in part through a grant from the Chan Zuckerberg Initiative Donor-Advised Fund. The post NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits appeared first on Sarcoidosis News. Link naar het originele artikel
  15. An enzyme that helps COVID-19 (coronavirus) infect the body also plays a role in inflammation and patient outcomes in inflammatory bowel disease (IBD), according to a new study led by Cedars-Sinai. The findings raise the possibility that anti-inflammatory drug therapies for IBD may aid recovery from coronavirus. Link naar het originele artikel
  16. The World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) and the Foundation for Sarcoidosis Research (FSR) have recognized the University of Miami Sarcoidosis Program as a Sarcoidosis Center of Excellence. This recognition is granted to multidisciplinary teams of medical professionals, who share a specialized facility that has proven sustainable and provides leadership, best practices, research, support and/or training for people with sarcoidosis and healthcare professionals. The University of Miami (UM) program — part of UM’s Miller School of Medicine — is the only center in Florida to receive this designation, which has been given to only 21 other centers around the world. “This designation provides formal recognition of our multidisciplinary team’s commitment to serve the needs of sarcoidosis patients and stay current with the ongoing advances in the field,” Mehdi Mirsaeidi, MD, said in a press release. Mirsaeidi is associate professor of medicine and clinical public health sciences at UM and director of the UM and VA Sarcoidosis Programs. The patient-centered UM program was launched in 2015. Since then it has become the largest sarcoidosis-focused program in the Southeast U.S., providing care to more than 500 people with sarcoidosis. “Our team helps manage this condition, prevent organ damage, and improve the overall quality of life. We offer our patients a supportive home with multiple options for treatments, including clinical trials,” Mirsaeidi said. The program’s multidisciplinary team includes a variety of specialists with different areas of expertise: there are pulmonary physicians, critical care doctors, pharmacists, and specialists in topics including cardiology, ophthalmology, nephrology, neurology, dermatology, gastroenterology, and rheumatology. “With this collaborative approach, our patients receive comprehensive care and the benefits of cutting-edge research,” Mirsaeidi said. Currently, UM researchers are working to develop and validate molecular diagnostic tests that could help to personalize sarcoidosis treatment. Efforts to improve treatment outcomes and to better understand the genetics underlying sarcoidosis are ongoing. The UM program also aims to better educate healthcare providers and medical students about sarcoidosis, which is particularly important because the symptoms of sarcoidosis can resemble other diseases, often resulting in delayed diagnoses. “We would like to expand our educational program to South America, where we can help academic institutions, hospitals, and physicians deliver leading-edge care to their patients,” Mirsaeidi said. The post University of Miami Health System Sarcoidosis Program Named Center of Excellence appeared first on Sarcoidosis News. Link naar het originele artikel
  17. Dirkk

    voorstelen

    Goede dag, Ik ben Dirk en mijn vrouw en zoon hebben Sarcodiose nu kook ik en heb natuurljk veel onderzocht wat wel en wat niet problemen geeft. Hetgeen ik heel belangrijk vond dat is de hoeveelheid Calcium in het eten, bv Boerenkool heeft veel calcium gefermenteerd vlees zoals salamie ook. Melkproducten kunnen echt niet, heel sterke reacties en pijn overal en we haalden dit eruit en binnen 2 dagen weer een stuk beter. Gist in brood, ik bak ons eigen brood met bakpoeder, perfect resultaat en zonliefhebbers..... zon is ook verkeerd bv Mijn Zoon in de zomervacantie altijd problemen met rug en nu zo min mogeljk Calcium en al 2 vacanties geen probleem meer. Calsium heb je natuurlijk nodig zeggen doktoren maar als ze sarcoidose vaststellen door een verhoogd calsium nivo ........... Ook mijn vrouw met staar in 1 oog en nu in corona tijd kunnen we er niks aan doen, maar we hebben een water filter geinstaleerd, in Friesland is dat verstandig, en omdat ze redelijk veel water drinkt kon ze van stijf en moeilijk lopen tot nu knie tot haar neus weer kraakhelder nadenken en organiseren en lopen tot de grens natuurlijk... avonds. Dit is dus geen directe ervaring met de ziekte maar dit wat wij doen heeft mij gemotiveerd om hier lid van te worden. Wij zijn heel blij dat we wat op gevonden hebben inplaats van 35 jaar je zo lam als een ..... te voelen Ik hoop dat jullie er iets aan hebben je kan op internet van elk voedsel vinden hoeveel er in zit en 30 is geen probleem en ik hoor graag wat er meer voor ervaringen zijn. Met vriendelijke groet, Dirk
  18. You may or may not be a sports fan. But today’s NFL trade deadline is a useful reminder to us all that some employers will stick by you through good and bad, while others will ditch you given the opportunity. By 4 p.m., a host of players will be finding out which type they’ve been toiling away and putting their bodies at risk for this season. Some disgruntled players want trades, but others will be shipped off to new teams feeling betrayed. Most people probably find it hard to muster any sympathy for multimillion-dollar athletes being shuffled around. But it tugged loose memories for me of my extended medical leaves due to Lyme disease and sarcoidosis. Much like players waiting today for word on their future, I also wondered whether my employers would keep me or let me go. I’ve experienced both sides. Although it sure as heck didn’t feel like it at the time, losing my job brought some positive changes to my life. Now you know When illness prevents you from working, your value to a company will become crystal clear. Learning the truth may hurt, but it also saves you from a future where you’re not truly appreciated. If your employer has been unsupportive while you’re out, being fired will also enable you to move on to the benefit of your health. Stress has a physical and emotional impact on our bodies, as the Mayo Clinic explains. Worrying nonstop about becoming unemployed takes a serious toll on one’s well-being. Reality check Being on the receiving end of a termination letter will also make you reexamine your priorities. For me, it pushed my focus back to where it should have been all along: solely on my health instead of my career. It also made me take a hard look at my pattern of putting work over my health and personal life. When a job is gone, you feel foolish over the harmful sacrifices you made trying to keep it. It’s a habit I changed when I reentered the workforce. Moving on I’ve benefited from having gone through both scenarios. It’s provided the insight to determine workplaces that value people, not just the work. If you are afraid to disclose your health issues or ask for any accommodations, that is a huge clue to which type you are laboring away for. Whether you care about today’s trade cutoff or not, one question you should be asking yourself before the time for an answer arrives is: “Will your employer support you when you need it most?” *** 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. Festive countdown: Discount grocer Aldi’s 2020 Advent calendars will hit stores Nov. 4, WRAL reported in a sneak preview. There are more than 20 varieties of the calendars, which can be opened for daily surprises to count down to the holidays. Favorites like wine, beer, cheese, and toys are back, along with new options like hard seltzer and candle calendars. You can buy them in more than 2,000 stores in 36 states. View the selections and release dates here. Indy Jazz Fest: The 22nd annual Indy Jazz Fest will be held as a four-part online streaming series, The Indianapolis Star reported. Shows featuring performances by Indianapolis musicians will be held Nov. 13, 14, 20, and 21. You can watch for free at indyjazzfest.net and at the festival’s Facebook and YouTube pages, but donations are encouraged to help reach a $25,000 fundraising goal. *** 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, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Will Your Employer Support You for Better or Worse? appeared first on Sarcoidosis News. Link naar het originele artikel
  19. Markd

    Voorstellen Mark

    Ik heb een paar slechte weken gehad. Alle verschijnselen kwamen op; slappe benen, gevoel alsof mijn aderen in mijn benen verstopt zijn (heb ik een keer laten meten, alles ok), slecht slapen, concentratieproblemen, conditie op het nulpunt etc. Na mijn werkdag ben ik panklaar en komt er vrijwel niets mee uit mijn handen. Nu gaat het weer ok. Paar goede nachten gehad en ik ben er voor mijn gevoel weer. Het is echt zo'n sinusgolf met up's en down's die ik nu al enkele jaren signaleer.
  20. (HealthDay)—For patients with psoriasis, smoking has negative effects, including increased frequency of nail involvement and cardiovascular diseases and higher psoriasis area and severity index, according to a study published online Oct. 14 in the International Journal of Clinical Practice. Link naar het originele artikel
  21. While current antiretroviral treatments for HIV are highly effective, data has shown that people living with HIV appear to experience accelerated aging and have shorter lifespans—by up to five to 10 years—compared to people without HIV. These outcomes have been associated with chronic inflammation, which could lead to the earlier onset of age-associated diseases, such as atherosclerosis, cancers, or neurocognitive decline. Link naar het originele artikel
  22. Joachim

    Using Willpower and Determination to Move Forward

    It has been an interesting week. I was having a conversation with a friend about getting back into the workforce. Although I have pulmonary sarcoidosis, I believe my 30-plus years as a video professional should still be relevant in the marketplace, especially during a pandemic. Many companies now rely on remote workers to get the job done. I see it as an opportunity for me since I can’t travel too much and I’d have my oxygen on hand should I need it. Maybe this could be the nudge I needed to reclaim some of my independence. A few days later, I saw a part-time job online that would have been perfect for me. It was three hours a week at a church a few blocks from my house. A technical job similar to my last one, it seemed like a good fit. So, I updated my résumé, drafted a cover letter, and even got support from a parishioner familiar with the church and the job. The rest was up to me. A leap of faith Over the next couple days, the opportunity was still in my sights, so I revisited my résumé and cover letter to make sure the i’s were dotted and the t’s crossed. I haven’t actively looked for a job since my first spontaneous pneumothorax three years ago, so I was being careful about putting myself back in the game. Needless to say, I was worried about making a good impression, at least on paper. It so happens that a friend holds weekly meetings at the church, so I could reach out to him about my plans to apply for the position. My last employer was a legal institution, where they continually stressed due diligence in everything. I took it upon myself to do some research about the church. I visited its website and poked around the various ministries it had in place, the size of the congregation, and other details. During my cyber-sleuthing, I noticed that one of the ministers was an old friend of mine whom I grew up with. I thought it was a genuine opportunity staring me in the face, but something inside me made me feel overly cautious about applying. The following Monday, I made up my mind to go through with it. It took an effort on my part, but I was prepared to forward my résumé. I found the posting online again, and when I hit the “apply” button, I received a notice that the position was closed. That left me feeling empty! Time for mental clarity I started thinking about how I had dropped the ball on this opportunity. Believe it or not, I had mixed feelings afterward. I felt disappointment, anger, and a sense of helplessness, but at the same time, I felt relieved. I guess I felt relief because I didn’t have to leave my comfort zone. I could remain in my home where I felt safe thinking about doing more than I can do. I heard someone say that when we want to improve ourselves, sometimes we’re satisfied with just making an effort. Once we make that effort, we feel like we’re improving, but we never follow through to completion. That’s the rub. We’re only satisfied with the effort. When my daughter started college, one of the books she was required to buy was “Self-Discipline: How to Develop and Master Willpower to Achieve your Goals” by Angel Campbell. I bought it, too, and started reading it when I had my first spontaneous pneumothorax. I continued to read it during my recovery. Two of the most important chapters that I’ll be rereading are “Competing with yourself “and “Overcoming your inner fear of failure.” I guess I should’ve thought about that book before I ventured out to make a personal change. I can promise you I won’t make that mistake again, nor will I dissuade myself from future opportunities. We still got skin in this game. *** 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, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Using Willpower and Determination to Move Forward appeared first on Sarcoidosis News. Link naar het originele artikel
  23. Severe ulcerative colitis—a form of inflammatory bowel disease (IBD)—has been linked to a newly-discovered strain of oral bacteria, a study led by UNSW Sydney has found. Link naar het originele artikel
  24. Testicular sperm aspiration for in vitro fertilization (IVF) is a successful strategy to overcome infertility associated with methotrexate– and steroid-resistant testicular sarcoidosis, a case study shows. The report documents a case of a man who, within two years of a sarcoidosis diagnosis, showed complete azoospermia (absence of sperm in semen), likely associated with a testicular granuloma blocking sperm passage. This case highlighted that obstructive azoospermia should be considered in men diagnosed with sarcoidosis who want to have children, the researchers noted. The study, “Spontaneous Infertility Secondary to Testicular Sarcoidosis: A Case Report,” was published in the Cureus Journal of Medical Medicine. Sarcoidosis-related chronic inflammation leads to the formation of small abnormal lumps or nodules — called granulomas — in several organs of the body, most often in the lungs. Involvement of genital and urinary organs (genitourinary sarcoidosis) is very rare. Previous studies have shown that the testes were affected in about half of the patients with reproductive tract involvement and that testicular sarcoidosis can lead to infertility. While many reported cases of sarcoidosis-associated infertility were resolved with some form of steroid treatment, others were not. Now, researchers at the Miami-based IVFMD fertility center and Lake Erie College of Osteopathic Medicine’s Research reported the case of a man with infertility associated with methotrexate- and steroid-resistant testicular sarcoidosis. The man and his partner went to the fertility clinic two years after successfully conceiving their first child naturally, with subsequent infertility. Since then, he had been diagnosed with sarcoidosis and started treatment with Solu-Medrol (methylprednisolone injection, an anti-inflammatory steroid), methotrexate, and levaquin (an antibiotic). Two separate semen analyses six weeks apart showed azoospermia. Since the couple had conceived four times before infertility was diagnosed (three of the pregnancies ended in spontaneous abortions), genetic factors were ruled out as a potential cause of azoospermia. Considering potential methotrexate-induced male infertility, the man was counseled to discontinue methotrexate treatment. However, three months after he stopped treatment, a semen analysis revealed no improvement. Lab work showed that his hormone levels, including testosterone, thyroid stimulating hormone, prolactin, follicle stimulating hormone, and luteinizing hormone were all within normal limits. Overall, the evidence suggested obstructive azoospermia, meaning that sperm was likely being normally produced but something was blocking its passage. The man was then referred to a urologist to be considered for testicular sperm aspiration — the collection of sperm cells from the testicle through a small needle — for IVF. On examination, the urologist reported a palpable testicular nodule, identifying it as a granuloma. However, “due to loss of follow-up, a confirmatory biopsy of the testicular nodule was never reported by the urology team,” the researchers wrote. Sperm aspiration followed by IVF was found to be an effective approach to manage the man’s infertility, as it resulted in the conception and delivery of a healthy boy at term. “This case report offers an insight into successful fertility treatment of methotrexate and steroid-resistant testicular sarcoidosis,” the researchers wrote, adding that “the possibility of obstructive azoospermia should be considered in males diagnosed with sarcoidosis who are seeking to preserve their reproductive potential.” The team noted that many cases of genitourinary sarcoidosis reported to date show subtle, if any, symptoms which may challenge its diagnosis especially if patients are not attempting to have children naturally. “Screening male patients with an initial semen analysis upon diagnosis of sarcoidosis would be a low-cost and effective measure to both screen and evaluate for future genitourinary involvement,” the researchers wrote. Further studies are needed to assess the real frequency of genitourinary involvement in sarcoidosis patients, the team noted. The post Case Study Reports Successful Strategy for Infertility Caused by Testicular Sarcoidosis appeared first on Sarcoidosis News. Link naar het originele artikel
  25. St. Jude Children's Research Hospital scientists have identified fibroblasts as the cells that serve as the gatekeeper of the inflammatory immune response in the lungs following influenza and other respiratory infections. Research is underway to translate the findings into treatment to preserve lung function and improve patient survival. The findings appear online today in the journal Nature. Link naar het originele artikel
  26. Researchers from the National Institutes of Health (NIH) have discovered a new inflammatory disorder called vacuoles, E1 enzyme, X-linked, autoinflammatory and somatic syndrome (VEXAS), which is caused by mutations in the UBA1 gene. VEXAS causes symptoms that included blood clots in veins, recurrent fevers, pulmonary abnormalities and vacuoles (unusual cavity-like structures) in myeloid cells. The scientists reported their findings in the New England Journal of Medicine. Link naar het originele artikel
  27. Joachim

    Growth Begins at the Edge of Fear

    With Halloween just days away, I’ve been thinking about fear. Not the holding-your-breath, muscle-clenching, waiting-for-horrors to unfold type. But rather the run-of-the-mill scares we’ve pushed down so deep we’ve forgotten they’re even there. The idea that I’m avoiding fear has been flitting through my mind for months. It became permanently lodged there when I was nearing the end of “Creepshow 2” and a ghoulish character on screen cackled, “Try to stay scared.” If you are familiar with filmmaker George Romero, who made the cult classic “Night of the Living Dead” and is king of all things zombie, you’ve heard his “stay scared” catchphrase before. Hearing it this month, it took on a new meaning for me that I can’t shake. I entered this year with the goal of getting out of my comfort zone. I can always tell when I’ve successfully broken the boundaries because my mind goes into full freakout mode. Years of managing unpredictable health symptoms has taught me how to play it safe — a little too well. I’m not willing to accept that my best years are behind me because of sarcoidosis. Romero’s trademark slogan tucked into “Creepshow 2” didn’t come across as some cheeky advisory to enjoy more cinematic horrors. By the time the movie credits began rolling, “stay scared” had morphed into something more meaningful for me. It had become a message about the need to continually challenge ourselves to overcome the fears that are holding us back. Being pushed back into the job market has made me consider whether fear is dictating my life. I found myself again applying for work I was confident I could do. But until I pursue the path that I dream about, I will remain exactly where I am: comfortable, but not knowing whether I am capable of more. The uncertainty tied to leaving the predictable behind is how we learn, according to research from Yale in 2018, which Inc. reported on. It’s how we grow. The message Romero left with me that night was simple: You can either be sidelined by fears or use them as a tool to reach your full potential. Which is why in his words, I’m now trying to “stay scared.” Happy Halloween! *** 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. Clever finds: If you always misplace things, your daily double has become mask-wearing and foggy glasses, and you squint to see videos on your phone, there’s help. Elite Daily reports on solutions and other handy products in “62 Clever Things You Should’ve Bought Sooner.” Become a Jedi master: A “Star Wars” virtual reality lightsaber dojo experience offered at pop-up locations in the U.S. last year is coming back. According to Jedi News, it will be available worldwide. Immersive entertainment studio ILMxLAB and virtual reality arcade company Nomadic are teaming up again to bring the new segment, “Vader Immortal – Lightsaber Dojo.” VR-headset-wearing fans will battle waves of droids, Stormtroopers, and other creatures with lightsabers and blasters before a final fight with Darth Vader. The studios haven’t announced pricing and locations yet. *** 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, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Growth Begins at the Edge of Fear appeared first on Sarcoidosis News. Link naar het originele artikel
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