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  1. Laatste week
  2. Joachim
    In 2003, I lost my mother suddenly. I still remember the day like it was yesterday. I had just returned to work after a break following an outpatient medical procedure my mom had accompanied me to. Before I left my job for the procedure, I started working on a project for a friend who had asked me to create a video celebrating his grandmother’s 80th birthday. In prior weeks, we had met a few times during happy hour to discuss the project and to share my ideas for the video. We used to work together, so our meetings were more casual than formal. Before I took my medical leave, my friend and I met so that I would have all of the pictures I needed for the video. I told him that I would start working on the video before I left for two weeks, and he was comfortable with that. We had about a month before the big party. He gave me a CD with all of the pictures he had scanned, arranged in order of use, which made my editing job significantly easier. I transferred the images from the disc into my editing application and arranged them in order. In just an hour, the hardest part of the job was done — or so I thought. Expect the unexpected I returned to my job in advertising two weeks after the procedure and was ready to hit the ground running. On the third morning, I received a call at the office informing me that something had happened to my mom and that I should rush to her house. I told my boss that I had to leave, and she shooed me out of her office in a hurry. I jumped in a cab and headed to Mom’s house. When I arrived, the neighbor across the street told me that my mom had been taken to the hospital a few blocks away. I took a cab there. From that moment on, my life would change. But I didn’t know then how much it would change. My mom had suffered a massive stroke and didn’t make it. I didn’t return to work for three weeks. When I did, the emotional scars were still raw. My buddy reached out to me to see if I needed anything. I told him how empty I felt, and that I didn’t think I could finish the video because of everything that had happened. He laughed and told me he believed that I could finish what I had started and that he wouldn’t take “no” for an answer. He promised to deliver anything I needed. Over the next two weeks, he met me every day after work and sat with me while we worked on the project. We joked and laughed at his family pictures, and I finally got the video finished — and on time! The feelings I had about my mother’s passing brought out a resilience I didn’t know I had. Believe you can, and you will Last week, I did something I hadn’t done in almost three years: I completed my first video! My accountant’s wife needed a video produced for her doctoral class, and she reached out to me for help. Admittedly, I was apprehensive. I had last sat at my computer to edit a video about 30 months ago. We started a dialogue about the type of video she needed. One video turned into possibly three, and definitely two. The last video I produced was on the Monday before my first spontaneous pneumothorax in 2017. Since then, I’ve been gun-shy about picking up my craft again. Over the years, that apprehension increased. Over time, it turned into fear, and I started becoming overwhelmed with the thought of being unable to enjoy what I love to do. I was perplexed about my inability to overcome my obstacles and contribute to my family and household. I decided to accept the challenge as another adventure for me. When I started the project, I had forgotten some of the basic skills needed for video editing. But the more I stayed with the challenge, the more my skills returned. YouTube helped, too! Within a week, I had finished the first video and received payment for my work. I immediately felt a sense of satisfaction and achievement, and I also felt that I had overcome my biggest obstacle: my own thoughts. In times of crisis, two people believed in my abilities and helped me to believe in myself again. You never lose the knowledge or skills you’ve acquired during your lifetime, but if you don’t continue to nourish them, your thinking can cause them to wither away, leaving you empty. And just like that, I got another call from a potential client. *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Sarcoidosis Doesn’t Play Fair, So Neither Should You appeared first on Sarcoidosis News. Link naar het originele artikel
  3. Joachim
    Hot sauce may burn the tongue, but the inner fire of inflammation brings real damage. Link naar het originele artikel
  4. Joachim

    Taking a Road Trip to the Atlantic Coast

    Joachim plaatste een onderwerp in Nieuws

    My husband is heading out on an impromptu business trip. Coincidentally, his destination is just minutes from one of our favorite vacation spots. I could easily stay home, but I’ve decided to accompany him. He’ll be training a new hire. After that, we’ll leave one of his company vehicles behind with the new employee. To return home, he could take a train, then a bus, and finally find an Uber or call me to pick him up at the bus station. But I offered to drive a second vehicle, which we’ll return home in. In many ways, staying home would be easier on me. I’ve referred in a previous column to the amount of consideration that goes into even visiting family at the holidays. Yet, I didn’t want to stay behind for a number of reasons. Having a second vehicle to drive straight home will be easier on him. Going along also is a way for us to have a few days away together. We’re heading to the New Jersey shore, an area I always love regardless of the time of year. In many ways, I prefer visiting the shore in winter. It’s a quiet time in that area, and I relish the peace and tranquility. There is also something about seeing the ocean that always helps to rejuvenate me. Years ago, when I first received my sarcoidosis diagnosis, I asked doctors the typical questions. Mostly, I was interested in what causes this condition. One doctor informed me that sarcoidosis could be related to evergreen trees. Interestingly enough, we bought a house and moved to Pennsylvania’s Pocono Mountains months after we got married. We had been living in that area for over a year when I started to exhibit symptoms. I often wonder if I would have gotten sarcoidosis if we had not moved. Was it caused by all those trees surrounding our home? Was there a fungus or an irritant in the area that brought on these challenges? In some ways, I feel better when we visit the coast of New Jersey. People attribute this simply to being on vacation, but the reality is that my husband’s business travels with us. So in many ways, we don’t leave the stresses of home behind. I also have had seasonal allergies attacks at times while there. This is especially true mid-May, when suddenly everything is in bloom overnight. My point is that I’m not convinced that moving to another area is the answer for sarcoidosis, at least not now. But I certainly do enjoy visiting while I can. Visiting the Jersey coast. (Photo by Kate Spencer) *** 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 Taking a Road Trip to the Atlantic Coast appeared first on Sarcoidosis News. Link naar het originele artikel
  5. Joachim
    Certain white blood cells, called macrophages, occur in higher numbers in older individuals and contribute to inflammation and oxidative stress that accelerate the aging process, according to a team of researchers. New findings suggest that macrophages can be altered to become less inflammatory, which may aid in improving the life span of aged individuals. Link naar het originele artikel
  6. Joachim
    Patients with lupus who take their medications as prescribed have much lower odds of developing type 2 diabetes, a common complication of the disease, finds a new study from the University of British Columbia. Link naar het originele artikel
  7. Joachim
    When it comes to memory, immune cells are known as the "bad cops" of the brain. But new research shows they could also be turned into "good cops" to power memory and learning. Link naar het originele artikel
  8. Joachim

    A Winter Walk Taught Me Some Unexpected Lessons

    Joachim plaatste een onderwerp in Nieuws

    I know that getting outdoors is good for my health and my sarcoidosis management. But the deeper we get into winter, the more I try to avoid it. Much like when I’m battling the hottest days of summer, a nature walk for me now is whatever I see on a brief trek to my car. But after leaving my car at a repair shop recently, I had a choice to make: wait an hour in freezing temperatures for the next bus or embark on a 35-minute walk home in the cold. I decided to set off on foot after an emotional sprint through the five stages of grief: Denial: Waiting at the bus stop believing the bus would come early. Anger: Cursing the Southeastern Pennsylvania Transportation Authority for only running buses hourly along the route. Bargaining: Telling myself that if I started walking, the bus would appear. Depression: Sulking that I dressed to be cute, not warm. Acceptance: Concluding that a warm bus ride was still an hour away. Braving mother nature For the first block, I thought, “This isn’t too bad.” But by the second block I was walking head-on into a stinging wind. I immediately understood why some people get the winter blues and exercise less during winter months. Ten minutes into my walk, my numb left foot woke up and began stinging in alarm at my decision to brave the elements in sneakers and cotton ankle socks instead of boots and heavy wool socks. That’s about the time the desire for my thermals, heavy winter coat, and insulated gloves — all left at home — set in. I pushed the thoughts aside and moved forward. That’s when the unexpected happened: I began to feel good. Embracing mother nature year-round As the American Heart Association notes, physical activity outdoors boosts immunity during the cold and flu season and offers the sun’s benefits without heat or humidity to contend with. Your heart doesn’t have to work as hard, you expend less energy, and the sun’s exposure can ward off seasonal affective disorder, a type of seasonal depression, according to Harvard Health. My impromptu wintery walk brought more immediate benefits. Getting my cardio — outdoors For starters, being cold made me walk faster than I do when it’s warm outside — stiff achy joints and all. My battle to eat more healthily was also won that morning. I power walked by fast food restaurants with only one thing in mind: getting to the warmth of my home as quickly as possible. Along the way, I saw houses, businesses, and eateries I had never noticed before while zipping by in my car. When I finally arrived at my front door, I felt better than I did stepping off a treadmill at the end of a workout. I’m sure part of it was because I made it home without my toes and fingers succumbing to frostbite, which felt like a possibility during the walk. But I also felt invigorated and that I had accomplished something. Walking on a treadmill means starting and ending in the same spot, but an actual walk takes you somewhere. My journey that morning showed me that just because it’s winter, there’s no reason to give up outdoor walks. Next time, I’ll just be sure to dress appropriately. *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis. The post A Winter Walk Taught Me Some Unexpected Lessons appeared first on Sarcoidosis News. Link naar het originele artikel
  9. Joachim
    The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. Yet even with its enormous resources, the FDA these days relies more and more on patients to provide feedback on therapy development, set regulatory priorities, and contribute to patient-reported outcomes. Starting with an HIV/AIDS patient group in the late ’80s, further expanding into oncology and other life-threatening health issues in the ’90s — and most recently on rare disease — the agency has given patients an ever-growing role in its regulatory framework. Attendees listen to a presentation at a PFDD meeting. (Photos courtesy of NORD) In a webinar organized by the National Organization for Rare Disorders (NORD), FDA representatives showed patients how to directly steer the treatment approval pipeline in a way that best serves their interests. The Jan. 23 NORD webinar featured several FDA officials: Andrea Furia-Helms, director of patient affairs staff; Michelle Tarver, director of patient science and engagement at the Center for Devices and Radiological Health; Robyn Bent, director of patient-focused drug development (PFDD); and Diane Maloney, associate director for policy at the Center for Biologics Evaluation and Research (CBER). Bent’s department at the FDA, the Center for Drug Evaluation and Research, deals with PFDD meetings, led both internally and externally, to advance patient engagement. Having previously worked with patients and families for 20 years as a pediatric nurse, Bent understands many of the priorities these people have. But she was proven wrong early during an externally led PFDD meeting on a rare disease known as CDKL5 deficiency disorder (once classified as an atypical form of Rett syndrome), whose earliest symptoms are seizures and developmental delays. Bent had predicted most parents would be concerned with treating seizures. Yet one mother of a girl with CDKL5 told her that treating constipation was a bigger priority, because of the distress and discomfort it caused her daughter. FDA encourages patient views The FDA offers plenty of other initiatives through its Patient Affairs office, including the Patient Engagement Collaborative and various rare disease listening sessions, in collaboration with NORD. The agency established Patient Affairs in 2017 to help patients contact the FDA. The Patient Engagement Collaborative links patient organizations with individual representatives to discuss patient engagement in medical product development. In turn, listening sessions educate patients about the FDA, and inform decision-making and early research and development at the regulatory body. “There’s a growing understanding from all of us that patients and their caregivers have very important voices and have an impact — not only in figuring out what the right endpoints are but also throughout the entire process,” Bent said. Tarver discussed similar listening programs at the Center for Devices and Radiological Health, which further connects patients with the agency. These programs include group conversations, community town halls, and the Patient Engagement Advisory Committee (PEAC), which consists of patients, caregivers and advocates who meet annually to offer their perspectives on emerging medical devices. Attendees at an FDA Rare Listening session. Since 2017, the PEAC has created a framework for engagement in clinical trials, supporting data sharing, and instituting better communication in cybersecurity safety. Maloney introduced the various patient engagement programs at CBER, which regulates biologic products such as blood, human tissue, gene therapies, and vaccines. CBER has a three-pronged approach when it comes to patient engagement. The Patient Engagement Workshop conducts internal information-sharing and brainstorming sessions across the agency, while the Rare Disease Coordinating Committee advances products for people with rare diseases, and the Science of Patient Input Initiative obtains patient input to support product regulation. Patients interested in further involvement can apply to be an FDA Patient Representative as a special government employee. In that role, the patient becomes a consultant for the FDA’s decision-making process. Furia-Helms encouraged patients to get involved in treatment development as early and as often as possible. Bent also favors organizations getting the FDA involved a year before a proposed and externally led PFDD, and Maloney told viewers it’s important to involve as many players as possible to get an accurate diagnosis. Patients can contact the FDA to set up a meeting through the Patient Affairs office, which is in close communication with each of the organizations involved in this webinar, by filling out a Request to Connect form. The post FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar appeared first on Sarcoidosis News. Link naar het originele artikel
  10. Joachim
    (HealthDay)—Biologics seem to be associated with greater reduction in psoriasis severity scores and higher drug survival rates than methotrexate in pediatric patients treated in a real-world setting, according to a study published online Feb. 5 in JAMA Dermatology. Link naar het originele artikel
  11. Earlier
  12. Joachim
    I see my pulmonologist every two to three months to see how I’m doing with my pulmonary sarcoidosis management and to follow up after pulmonary function tests. Before I see him, I usually get a few X-rays of my chest, and then I’m off to the pulmonary function lab for a six-minute walk test. During the test, the therapists rate my walking ability with and without oxygen. I usually can walk for about three minutes before they have to harness me with oxygen. After that, it’s smooth sailing — except when they have to raise the oxygen output to compensate for loss during the walk. When it’s over, they rate my overall physical strength and evaluate whether my legs are tired, whether I feel dizzy, or whether I’m out of breath, among other things. Then, they take my blood pressure, and I’m off to see the pulmonologist. My pulmonologist is a really cool guy, and I’m pleased that I inherited him when my previous one moved to another state. He reviews the day’s tests and compares them with previous tests and notes from my last visit. Surprisingly, he has seen no significant changes, and he has even noticed some progress. In one test, I walked farther than I normally do, and I didn’t use as much oxygen. I told him that I think the progress is a result of continuing the exercises I learned in pulmonary rehab. It seems that my gym visits a few days a week have helped. Words of wisdom Every time we meet to discuss my diagnosis and the various treatment alternatives I should consider, my pulmonologist says, “You don’t want to get too sick.” I assure him that I agree, which is why I continue to do physical activities — including happy hour! His parting words usually are: “Just keep doing what you’re doing,” followed by, “Remember, you don’t want to get too sick before you do anything.” Putting the pieces together In January, I saw more doctors and had more tests done than I can remember in my 55 years. When I saw my pulmonologist two weeks ago, he gave me the results of all of the tests I had at the beginning of the year. It was somewhat of a cathartic moment, as I had worried about what the results would reveal. With the results in hand, the only thing doctors noticed was that I needed more vitamin D. Lately, I’ve thought about what he frequently tells me: “You don’t want to get too sick before you do anything.” That could mean one thing to one person, or it could mean several things to many people. I started thinking about how our emotional and mental health can make us too sick to do anything to possibly help ourselves. Sometimes our thinking process stalls our ability to move forward when we know we should. I thought about the times I was in the hospital, and admittedly, sometimes it seemed like I wasn’t coming home anytime soon. But I did, and that’s what I should remember. I got better! I also started thinking about the “what-ifs” regarding my health. What if I didn’t want to participate in pulmonary rehab? How would my life be different? What if I didn’t continue to push myself to go to the gym? What would my mobility be like? The biggest “what-if” is what if I didn’t agree to take all of the tests my doctors required me to take? How would my health change this year, if not for the better? Sarcoidosis, particularly pulmonary sarcoidosis, is a crafty chronic illness that we need to stay on top of. I’m not getting any younger, and I’m thankful that I’ve been allowed to get a little older. Right now, I’m on the back nine of this 18-hole tournament, so I better choose my shots wisely and correctly. More importantly, I better be proactive and competitive while I’m still able to compete. *** 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 Pulmonologist Offered Some Good Advice About Managing My Health appeared first on Sarcoidosis News. Link naar het originele artikel
  13. Joachim
    The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business last month — just over two years after the European Union decided to relocate the EMA to the Netherlands in the wake of Brexit. “A year ago, we lowered the flags in our London offices with a heavy heart,” Guido Rasi, EMA’s executive director, said Feb. 3 as the flags of the 27 remaining EU member states were installed in the lobby of the new EMA headquarters. “With this flag-raising ceremony in our new Amsterdam home, we can now close the chapter of our relocation, look to the future and finally refocus fully on our public health mission.” Flags of the EU’s 27 member states at EMA headquarters, Amsterdam. (Photo courtesy of EMA) More specifically, that means the EMA — which on Jan. 26 marked its 25th anniversary — can get back to the business of promoting effective medical therapies, especially for the roughly 25 million rare-disease patients who live within the EU’s borders. The agency operates on an annual budget of €317 million (about $350 million) and employs 780 people, with the largest numbers of staffers coming from Italy, Spain, and France. Violeta Stoyanova, MD, chairs the EMA’s Committee for Orphan Medicinal Products (COMP). In 2000, EMA established the committee — one of seven — to evaluate applications for orphan designation of medicines for rare diseases. To qualify for orphan designation, a medicine must intend to treat, prevent, or diagnose a disease that is life-threatening or chronically debilitating. In addition, the prevalence of the condition among the EU’s 27 member states cannot exceed five in 10,000, or it must be unlikely that sales of the medicine would generate sufficient returns to justify the investment needed to develop it. “In 2000, the European Commission approved specific legislation meant to incentivize development of drugs for rare diseases, since this is not an attractive market for pharma companies,” Stoyanova said in an exclusive interview with BioNews Services, which publishes this site. “In the end, it’s all about bringing new products to the European market.” EMA: Not the FDA The EU is currently home to 445 million people as well as some of the world’s largest orphan drug markets, including France, Germany, Italy, and the Netherlands. Yet not all orphan-designated medicines reach the marketing authorization application stage. Those that do are evaluated by the EMA’s Committee for Medicinal Products for Human Use — using the same strict safety and efficacy standards that apply to all therapies evaluated by the EMA. At present, more than 140 orphan medicines are authorized in the EU. Violeta Stoyanova, MD, chairs the EMA’s Committee on Orphan Medicinal Products. (Photo courtesy of EMA) European legislation dealing with rare disease therapies is somewhat similar to the U.S. Orphan Drug Act of 1983, which offers seven-year market exclusivity for approved therapies, tax incentives to invest in research, clinical research subsidies, and exemptions from user fees charged by the Food and Drug Administration (FDA). “Under the European legislation, anyone can apply for an orphan designation at any stage of drug development,” Stoyanova said. “That means a group of scientists can come to the committee showing data from early experiments in animal models for a disease they want to develop a drug for. It can also be the development is further along, and there is some clinical data in a few patients. If the data is sufficient and all criteria are fulfilled, then the sponsor receives an orphan status for the product, meaning it’s eligible for pre-marketing incentives.” In addition, sponsors must demonstrate proof-of-concept, or evidence of medical plausibility. “If, for example, someone wants to develop a drug for cystic fibrosis, the experiments should be done in animals of CF or patients with CF and not another disease,” she explained. “One criteria which is specific for Europe is that when coming to the market, the drug must either be the first in its kind for this specific disease, or if other medicinal products or methods of treatment exist, like surgery, the new orphan drug has to be in some way superior or show significant benefits, meaning it will change the life of rare-disease patients.” Stoyanova added that sponsors may be eligible for different types of scientific grants meant to encourage the development of therapies for rare diseases. Incentives for orphan products “In general, we shouldn’t compare the European and U.S. systems, simply because we work under different legislation,” she said. “With so many member states, we have to reach a consensus. Everyone discusses and then votes. That’s very different than the way the FDA comes to a decision.” One difference, she pointed out, is that “certain drugs might not comply or fulfill the criteria, therefore they come to the market but not as orphans. This is something that can happen in Europe but not in the U.S. because there isn’t a requirement that one drug be better than the previous one.” The European Medicines Agency (EMA) has officially opened its new headquarters in Amsterdam. (Photo by Larry Luxner) Stoyanova said EMA’s most attractive financial incentive is 10 years of market exclusivity as long as a particular therapy maintains orphan status, meaning another product which is similar cannot come to market. “But there are all kinds of caveats to that,” she said. “At Year 5, a member state could trigger a reassessment. Therefore, exclusivity could be shorter.” Therapies approved by the EMA in 2018 include Lamzede (velmanase alfa), a long-term enzyme replacement therapy to treat mild-to-moderate forms of alpha-mannosidosis, a lysosomal storage disorder; Mepsevii (vestronidase alfa), for the treatment of mucopolysaccharidosis type VII, also a lysosomal storage disorder; and Namuscla (mexiletine hcl), a treatment for myotonia, or muscle stiffness in adults with non-dystrophic myotonic disorders, a group of inherited muscle disorders. That year also marked the landmark approval of Spark Therapeutics’ Luxturna, a gene therapy used to treat adults and children with inherited retinal dystrophy caused by RPE65 gene mutations, which generally leads to blindness. Stoyanova, a molecular geneticist by training, was educated in her native Bulgaria as well as at the International Centre of Genetic Engineering at Biotechnology in Trieste, Italy, and at several Dutch institutions, including Erasmus Medical Centre in Rotterdam, University College Utrecht, and the University of Amsterdam. EMA looks to the future Her clinical research focused on identifying mutations in Duchenne muscular dystrophy, cystic fibrosis, fragile X syndrome, hemophilia, thalassemia, spinal muscular atrophy, and Friedreich’s ataxia. After a career in genetics, she moved to the regulatory world. Stoyanova has chaired COMP since September 2018, when she was elected to a three-year term. The EMA’s new Amsterdam headquarters. (Photo by Larry Luxner) Besides Stoyanova, COMP consists of delegates nominated by each of the EU’s 27 member states, plus one member nominated by Iceland and Norway. In addition, the committee includes three patient delegates, who currently represent the Dravet Syndrome European Federation, a Dutch network of rare cancer patients, and the Italian foundation for thalassemia. There’s also an observer from the Paris-based Eurordis who attends all meetings, as well as three experts — clinicians or university professors — appointed by the EU to provide additional guidance in areas where it is needed or lacking. COMP convenes once a month for three days at EMA’s Amsterdam headquarters to discuss pending applications. Asked about the possible near-term EMA approval of gene therapies such as Novartis’ Zolgensma for SMA — which carries a U.S. retail price of $2.125 million for a one-time dose — Stoyanova chose her words carefully. “Everyone was very enthusiastic when we discussed the potential of gene therapy many years ago,” she said. “We thought that if you’re able to replace the mutated gene with a normal one, the disease can be potentially cured. Now that we’ve had more experience with some of the first gene therapies, it’s become clear that one should be much more cautious in deciding which patients to treat, and when to treat.” The post With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus appeared first on Sarcoidosis News. Link naar het originele artikel
  14. Joachim
    Chronic inflammation, which results when old age, stress or environmental toxins keep the body's immune system in overdrive, can contribute to a variety of devastating diseases, from Alzheimer's and Parkinson's to diabetes and cancer. Link naar het originele artikel
  15. Joachim
    I mentioned in a previous column my desire to embrace winter this year. As I’m writing this, it has been unseasonably warm here in the Northeast. Warmer temperatures help tremendously with my sarcoidosis symptoms, and for this, I am grateful. But I know the winter elements are still coming. So, along with my winter-themed book and movie list, I thought engaging in some winter photography might be a good way to mark the season. Like most people, I have a cellphone that produces nice, clear pictures. I also have a Canon camera from my days as a newspaper reporter. The Canon allows me to take the typical landscape shots. It also enables me to capture action shots and close-ups, even from a distance. Luckily, it is fairly easy to use and produces great images, even for an amateur like me. As I dig through my photo albums in both digital and print, I recognize that some of the best winter pictures I have captured to date focus on nature. A few were taken after a snowfall. Sometimes the likeness depicts a dusting of snow. Other times, the photo was captured after a storm that left a healthy accumulation of snow. In either case, the snow definitely adds a nice element to the images. Footprints in the snow. (Photo by Kate Spencer) Animals is another theme that emerges in my pictures. My collection includes many photos of our dogs. Additionally, a few likenesses of rabbits, birds, and even bird tracks appear. I have missed some great moments, like when a bright red fox ran across the road. A cardinal that frequents our backyard apparently is camera-shy and difficult to photograph. I’ll continue to try to capture him, though, and perhaps one day I’ll be successful. Like other forms of creative art, photography is therapeutic and helps to inspire the imagination. Even when my sarcoidosis symptoms are acting up, I can usually still engage in photography. As I look through my albums, I recognize that some pictures are more memorable than others. However, while I’m engaged in photography, I know that I’m not thinking about my symptoms. For me, that is really the greatest image of all. Play time! (Photo by Kate Spencer) *** 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 Winter Photography Might Be Just What the Doctor Ordered appeared first on Sarcoidosis News. Link naar het originele artikel
  16. Joachim
    When I was diagnosed with sarcoidosis, my physicians drilled into me the importance of annual lung and eye exams. And I have followed through every year without fail. But numerous readers have made me aware of another important area of concern: the heart. February is American Heart Month and a reminder to make an evaluation for cardiac sarcoidosis a priority as my readers have urged. A silent threat My sarcoidosis was confirmed by bronchoscopy in 2003. But 2016 was the first time I underwent any kind of testing for cardiac sarcoidosis, and that was a fluke. I had been diagnosed with postural orthostatic tachycardia syndrome, and a potential aortic valve mass was spotted during an exercise stress echocardiogram. An MRI, a second echocardiogram, and an EKG followed and no evidence of cardiac sarcoidosis was found. I didn’t give it another thought until last year when readers of my column shared stories of the devastating sudden loss of loved ones from cardiac sarcoidosis. Their loved ones’ cardiac sarcoidosis went undiagnosed until after their deaths, which is often the case. A 2016 study found cardiac involvement to be the most common cause of sarcoidosis-related death in those examined postmortem. Not as rare as believed Cardiac sarcoidosis cases doubled between 2005 and 2011, according to a study that led researchers to conclude the disease may not be as rare as once thought. Cardiac sarcoidosis is only diagnosed in about 5 percent of those with sarcoidosis. But it is detected in up to 25 percent of those with systemic sarcoidosis upon autopsy or by using advancing imaging techniques. That indicates that the rate of occurrence is far higher than previously reported. A study published in the Cardiology Journal in 2018 estimated that 3.7 percent to 54.9 percent of those with systemic sarcoidosis are affected by the condition. Beginning the conversation Cardiac sarcoidosis goes largely undiagnosed because there are no clear diagnostic guidelines. The Cleveland Clinic called it one of four types of sarcoidosis to watch and said the long-term prognosis is good if it is detected early. My conversation with physicians about cardiac sarcoidosis ended when no evidence was detected in 2016. I never asked whether additional testing was recommended, how often I should be evaluated, or how to minimize my risk. But thanks to readers, those are questions I will be addressing when I return to the Cleveland Clinic in a couple of months. If you haven’t already done so, I strongly urge you to discuss cardiac sarcoidosis with your physicians. *** 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 Thanks to Readers, I Am Making My Heart a Priority appeared first on Sarcoidosis News. Link naar het originele artikel
  17. Joachim
    The American Thoracic Society (ATS) Foundation Research Program and the Foundation for Sarcoidosis Research (FSR) have awarded a Foundation Partner Grant to Nicholas Arger, MD, at the University of California San Francisco, to study the role of a specific population of immune cells in sarcoidosis-related inflammation. The $80,000 ATS Foundation Partner Grants — $40,000 per year, for two years — are given to researchers from around the world who have devoted their careers to the discovery of scientific breakthroughs, and the improvement of patient care. The grant provided to Arger will support his research project, titled “Single Cell RNA sequencing of high T-bet-expressing T cells to determine their role in sarcoidosis.” Sarcoidosis is primarily caused by the malfunctioning of immune cells. In particular, T-cells — a subset of immune cells — are heavily involved in the disease mechanisms. “The goal of this project is to gain a better understanding of a population of immune cells that potentially contribute to ongoing inflammation in the disease,” Arger wrote in his application summary, according to a press release. Arger previously identified a population of T-cells with high levels of T-bet, which is a protein that controls the activity of several genes associated with inflammation. “I found [these] cells almost exclusively in patients who had declines in their pulmonary function over time as compared to patients who have had stable lung function and have not required treatment,” Arger said. The researcher’s goal now is to investigate the biologic function of these cells and determine whether they represent an expanded T-cell population. Arger plans to carry out this project through the use of single cell genomic sequencing techniques, which allow the profiling of individual cells. “These findings will help the scientific community understand potential mechanisms that drive the inflammatory response in this disease and also help distinguish patients who have progressive disease from those who do not,” Arger said. Dean Schraufnagel, MD, chair of the ATS Foundation, noted that sarcoidosis, “can have devastating consequences [and] has been a mystery since it was discovered over a hundred years ago.” “Part of the problem was that there were relatively few scientists committed to its research,” Schraufnagel said. “ATS grants support young investigators, such as Dr. Arger, to lead them toward a career that will help unravel the puzzles of sarcoid.” Over the years, the ATS Foundation Research Program has granted approximately $19.3 million to 263 scientists, both in the United States and worldwide. In turn, FSR has fostered over $4 million in research projects dedicated to the sarcoidosis field. The goal of FSR “is to support dedicated investigators who aim to better understand how this challenging disease works,” said Noopur Singh, director of research programs. “Projects like Dr. Arger’s cultivate necessary data for the scientific community to gain insight into sarcoidosis,” Singh said. “We are pleased to see young investigators that are dedicated to increasing the understanding of this disease, and creating an impact not only for future research, but for sarcoidosis patients.” The post ATS Foundation, FSR Award Sarcoidosis Research Grant to Nicholas Arger of UCSF for Immune Cell Study appeared first on Sarcoidosis News. Link naar het originele artikel
  18. Joachim

    Voorstellen dgotje

    Joachim antwoordde op dgotje's onderwerp in Voorstellen

    Met ons dus zovelen... Ben persoonlijk geen fan van de pred en al helemaal niet in die hoge dosis... Merk je verschil in spierkracht nu je weer begonnen bent? Ik hoor zo nu en dan verhalen van mensen die moeite hebben met spieropbouw na hun pred kuur.
  19. Joachim

    Knowledge Is Power When Dealing with Sarcoidosis

    Joachim plaatste een onderwerp in Nieuws

    The first month of the year has been an eventful one for me, to say the least. I spent much of January taking tests to evaluate my current health status and visiting the various doctors on my team. It has been a busy month for my wife, too, as she accompanied me to many appointments. Last week, I met with my pulmonologist to discuss the results of my tests and potential therapies. Sarcoidosis doesn’t take a break after you’ve been diagnosed. During the first week of 2020, I had 62 blood tests, eight lung imaging tests, an electrocardiogram, an echocardiogram, a cardiac stress test, and pulmonary function tests. Needless to say, my medical team now knows everything about me, including what I want to be when I grow up! Before I attended my follow-up appointments, I logged on to my hospital account to take a look at my results. By all accounts, I’m in very good health except for my lungs. I was amused by one of the blood test results showing that I had no illegal drugs in my system — not that I was worried about that, but it confirmed that they do test for everything. At my initial consultation with my pulmonologist to evaluate me for alternative therapies and treatments, I told him that I wanted to know everything I could possibly know about the state of my current health, my prognosis going forward, and what treatments would benefit me the most. The results of all the tests found that I had low levels of vitamin D and my lung function was still compromised. I would encourage anyone with a chronic illness to have a similar conversation with their medical team. If for no other reason, at least you’ll know what’s going on with your body and the questions to ask. The tests can give you a starting point to help you get your life back on track. No matter the circumstance, keep living The day I went in for my test results, I met with five folks, doctors included. At each appointment they reviewed my chart and medical history, and each one remarked that I’m not currently on any medications. They were very surprised — but my wife and I just laughed and confirmed that I wasn’t on any meds. One physician expressed her surprise that I go to the gym at least three to five times a week. I told her that I have pulmonary rehab to thank for getting me back into the swing of things. As my pulmonologist has told me time and again, “Keep doing what you’re doing.” During my hospital stay while recuperating from spontaneous pneumothorax, respiratory and physical therapists told me about the importance of moving, especially for someone with a lung disease. One therapist told me that each day you lie in a hospital bed without moving is equivalent to three to five days in your own bed. I remember that after I had been in the intensive care unit without moving my body for about two days, they put a “fall risk” bracelet on my wrist and told me to call a nurse if I needed to get up. I thought they were kidding until I tried to stand on my own. I called the nurse after that episode. Knowledge is power After about an hour or so speaking with the other doctors, I finally saw my pulmonologist. He’s been my doctor for several years, probably about 10. He reminds me a little of myself, a bit quirky and somewhat of a rule breaker. His nurse confirmed my assessment of him during my meeting with her. As long as he’s been my doctor, he’s never met my wife, so this was a grand occasion for the two of them. I could tell that she took an immediate liking to him. He entered the room carrying a fairly large blue binder containing the culmination of all of my tests. Each section had a color tab associated with it. He began reading the results — all of them were good, even some of the lung tests, but he had a new concern. Pulmonary sarcoidosis can lead to pulmonary hypertension, which if not addressed early, or at all, can become a serious issue. Taking the first step in keeping on top of your health can be daunting, but knowledge is key. Diet, exercise, and a well-connected medical team are needed to overcome health challenges. And a positive outlook makes all the difference. *** 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 Knowledge Is Power When Dealing with Sarcoidosis appeared first on Sarcoidosis News. Link naar het originele artikel
  20. Joachim

    Your gums reveal your diet

    Joachim plaatste een onderwerp in Nieuws

    Sweet soft drinks and lots of sugar increase the risk of both dental cavities and inflammation of the gums—known as periodontal diseases—and if this is the case, then healthy eating habits should be prioritised even more. This is the conclusion of a research result from Aarhus University. Link naar het originele artikel
  21. Rita Schoutteten Rita Schoutteten joined the community
  22. Joachim
    The study reveals a detailed epigenetic mechanism for how interleukin-1-beta, a common cytokine that helps fight infections during inflammation, plays a critical role in cancer metastasis. The researchers found that chronic exposure to interleukin-1-beta can promote lung cancer metastasis through inheritable changes of gene expression without altering DNA sequence. Because of these gene alterations, cancer cells can memorize this phenotype—known as epithelial-to-mesenchymal transition, an important step during cancer metastasis—to successfully reach distance organs and subsequently colonize. Link naar het originele artikel
  23. Joachim

    Familial psoriasis may not be tied to obesity

    Joachim plaatste een onderwerp in Nieuws

    (HealthDay)—Obesity does not necessarily induce or contribute to familial psoriasis, according to a study published online Jan. 17 in the Journal of Dermatology. Link naar het originele artikel
  24. Joachim
    Claudio Franceschi, a world-renowned scientist, professor at the University of Bologna (Italy) and head of the Research Laboratory for Systems Medicine of Healthy Aging at Lobachevsky University, together with other members of an international research team, has described the mechanisms underlying chronic inflammation and identified several risk factors leading to disease. As noted in the paper "Chronic inflammation in the etiology of disease across the life span," published in the journal Nature Medicine, these include infections, physical inactivity, diet, environmental factors, industrial toxicants and psychological stress. Link naar het originele artikel
  25. Joachim
    I miss traveling. Because of sarcoidosis, sleep difficulties, equilibrium challenges, pain, and constant fatigue must be considered. Other types of travel are no longer feasible, so I mostly stick with driving short distances by car. As I mentioned in a previous column, even visiting family during the holidays requires careful preparation and maneuvering. For the most part, I’ve made peace with losing travel. But I still yearn to visit new places. I love experiencing different cultures and enjoying other cuisines. During the Christmas season, I stumbled upon a television special that covered Christmas celebrations in different countries, including Germany, Switzerland, England, and Norway. From folklore surrounding Santa Claus and holiday foods to special shopping markets and unique gift-giving experiences, the program encompassed Christmas in its entirety. In a sense, I felt immersed in these different cultures, if only for a short time. Travel, specifically by air or boat, is out of the question for now. Maybe that will change someday. But the program encouraged me to discover ways to explore other regions of the world from the comfort of my home. Years ago, I read “Under the Tuscan Sun” by Frances Mayes and watched the movie. “Under the Tuscan Sun” immersed me in the sights, sounds, food, and traditions of Italy. A few books by the late author Peter Mayle, including “A Year in Provence” and “Toujours Provence,” are full of delicious details about life in that area, too. England enthralls me. When I was younger, I envisioned visiting someday, enjoying the lush countryside and all it has to offer. I regularly peruse Victoria magazine to enjoy a taste of this faraway delight without leaving home. Friends have suggested I watch “Downton Abbey” for more of the same. As a freelance writer, I can bid on projects that let me research and study different regions of the world. A recent assignment on the indigenous arts and crafts market of Costa Rica was fun, enlightening, and informative. It was a fantastic way to incorporate my passion for creativity into a productive writing exercise while exploring the culture of Costa Rica. My late paternal grandmother used to say that life is an ongoing series of adjustments. Our lives depend on how we handle these adjustments, and what we make of our new circumstances. I consciously choose to “travel” with sarcoidosis in this altered manner. Even though I’m not exploring the world in typical fashion, I will focus on the richness these experiences bring to my life. *** 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 Altering My Approach to Traveling with Sarcoidosis appeared first on Sarcoidosis News. Link naar het originele artikel
  26. Joachim

    Sarcoidosis Is a Ticking Time Bomb

    Joachim plaatste een onderwerp in Nieuws

    I stopped at a tire center this month to have one of the tires on my car checked. The small bubble on the sidewall didn’t seem like a big deal to me, but I was told it was a ticking time bomb that could blow at any moment. That was an “Aha!” moment. Days earlier, I had struggled to explain to a close family friend what it meant to battle sarcoidosis. Ticking time bomb sums it up perfectly. That’s what it’s like to live with a disease that can attack my body anytime, anywhere. A roulette wheel Being diagnosed with sarcoidosis is like a spin of the roulette wheel. You hold your breath and wait to see where fate falls. Some get lucky and sarcoidosis disappears on its own without any treatment. Others, like me, are in a lengthy, wide-ranging battle. We try to anticipate where the next punch will land. Sometimes we manage symptoms enough to carry on with life, which was my case for several years. But out of nowhere, a knockout punch connects. It happened to me in April 2011. I went home from work expecting a week or two of bed rest to get my health back on track. But I wouldn’t work again until April 2018. And my fight to work full time continues. Baggage for life Sarcoidosis is frustrating because it’s unpredictable and can be difficult to diagnose and manage. But it is also difficult to be told you are in remission when your body doesn’t seem to have gotten the memo. Symptoms such as fatigue frequently persist in remission. It is not a fatigue that is cured by a few hours of sleep or a couple of cups of coffee. It can be downright debilitating, and it can be a long-lasting problem. Sarcoidosis can fool some into thinking it’s gone, only to pop back up in a different area of the body. That was the case with one woman who relapsed after nine years. Worse, some may not have been in remission. Many relapses may represent instances of the disease being suppressed, according to a study published in the European Respiratory Journal that found it’s impossible to determine when the disease is in remission. Forging ahead For $249, I bought a tire and the peace of mind that I was no longer driving on a ticking time bomb. It’s not that easy with sarcoidosis, as I explained to the family friend I’ve called “aunt” my entire life. The best that we can do is forge ahead, hope for the best, and make the most of those days when we have the upper hand. *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Sarcoidosis Is a Ticking Time Bomb appeared first on Sarcoidosis News. Link naar het originele artikel
  27. Joachim
    Researchers at Swinburne have created a device that lets users assess and track their own respiratory condition. The device is currently in clinical trials in hospitals in Melbourne, Sydney and the UK. Link naar het originele artikel
  28. Joachim
    aTyr Pharma announced a collaboration and license agreement with Kyorin Pharmaceutical to develop and commercialize ATYR1923, its potential disease-modifying treatment for those with interstitial lung diseases (ILDs), including pulmonary sarcoidosis, in Japan. ATYR1923 is a fusion protein that contains a portion of a human antibody linked to a protein called histidyl tRNA synthetase. It has been designed to suppress immune responses associated with lung inflammation and scarring (fibrosis) by modulating the activity of the neuropilin-2 (NRP-2) receptor protein. “We are very pleased to enter into this collaboration with Kyorin, a leading respiratory focused pharmaceutical company in Japan,” Sanjay Shukla, MD, president and CEO of aTyr, said in a press release. “As in the U.S., ILDs represent an area of significant unmet medical need in Japan, and Kyorin’s development and commercial capabilities will enhance our ability to improve the lives of patients with these serious conditions. We believe this collaboration further validates ATYR1923, and potentially accelerates development in other ILDs,” Shukla added. The safety, tolerability, early efficacy, immunogenicity, and pharmacokinetic properties of ATYR1923 are currently being investigated in up to 36 people with pulmonary sarcoidosis in a Phase 1b/2a clinical trial (NCT03824392). (Immunogenicity is the ability a compound to trigger an immune response; and pharmacokinetics studies how a therapy affect the body: how it’s absorbed, distributed, metabolized, and eliminated.) Patients will be randomly assigned to either ATYR1923 at a dose of 1.0, 3.0, or 5.0 mg/kg, or a placebo every four weeks. The main goal of the trial, which is recruiting at about a dozen sites across the U.S., is to assess the incidence of treatment side effects from the study’s start (baseline) until week 24. A pre-planned interim analysis of the first 15 people treated in the trial indicated that ATYR1923 has a good safety profile, with only mild-to-moderate adverse events reported. Most were found to be unrelated to the treatment. Under the terms of the agreement, Kyorin will hold the exclusive right to develop and commercialize ATYR1923 in Japan. The company will also be responsible for funding all research, development, regulatory, marketing, and commercialization activities related to ATYR1923 in the country. In turn, aTyr will receive an upfront payment of $8 million, and be eligible for additional payments totaling up to $167 million once certain developmental, regulatory, and sales milestones are achieved. aTyr will supply all therapeutic products for Japan, and provide additional developmental support. “We are excited to enter into this agreement with aTyr and bring this new, potentially first-in-class drug to Japanese ILD patients,” said Yutaka Ogihara, president and CEO of Kyorin Holdings, the parent company of Kyorin Pharmaceuticals. The post aTyr and Kyorin Partner to Bring Potential Lung Sarcoidosis Treatment, ATYR1923, to Japan appeared first on Sarcoidosis News. Link naar het originele artikel
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