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  1. Laatste week
  2. Joachim
    Many folks with chronic health issues have difficulty focusing on too much at any given time. I have repeatedly tried to overcome this habit. Each day, I’m faced with the reality that my life is different and I have to move on, but it’s easier said than done. Moving forward with a sense of purpose needs to be my decision, and I need to make it count. Safety in numbers As of this writing, it has been 1,154 days since my first spontaneous pneumothorax and 880 days since my second. After my first incident with my left lung, I spent 53 days in the hospital. During that time, I worried about everything! I hadn’t worked in over a year, and when this happened, my world all but collapsed — much like my lung. Subsequently, I had to use most of my retirement savings to keep from losing my house, and dealt with various other issues we encounter as adults. During that time, I told myself I was going to start doing more of the things I love to do, such as cooking. I had put cooking on the back burner to concentrate on getting back to where I was physically before the incident. Everything was going well. I participated in pulmonary rehab and joined a gym when the program ended. I was well on my way to recovery, though the mental scars still invaded my thinking. The second spontaneous pneumothorax occurred when I least expected it, 228 days after my release from the hospital. This time, it was in my right lung. I was hospitalized for 27 days and released a few days before Father’s Day. Five days later, and two days before my birthday, I was readmitted for crepitus. I spent about seven days in the hospital. The numbers don’t lie, especially when you remember them during certain seasons. Why am I putting myself through this mental manipulation? I realize I can change the narrative of this story. Changing the game I am not benefiting from constantly thinking about the times I was down and out. But by grace, I’m still standing, alive, and causing havoc among my family and friends. I came across an interesting article this week that made a lot of sense. The author, Don Johnson, explains how to “get unstuck and reclaim your mojo.” I realized I was keeping myself stuck by reminding myself of how many times I’ve been hospitalized and how much time I’ve spent recuperating. I was unconsciously reminding myself where I’ve been, and not realizing how far I’ve come. Life brings many ups and downs. We can appreciate both and we can live with both, but there has to be a happy medium that allows us to keep going. I know where I’ve been and how far I’ve come with this illness. Now, I want to focus on how much further I can go. I have no tears for sarcoidosis. *** 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 There’s No Safety in Numbers When You Live With Sarcoidosis appeared first on Sarcoidosis News. Link naar het originele artikel
  3. Fam Cats Profielfoto van Fam Cats is gewijzigd
  4. Joachim
    Relative to the general population, people with sarcoidosis are at higher long-term risk of heart failure and other heart problems, a large Danish data study suggests. Its researchers recommend regular monitoring of cardiac issues across this patient group. The study, “Long-Term Adverse Cardiac Outcomes in Patients With Sarcoidosis,” was published in the Journal of the American College of Cardiology. Sarcoidosis is characterized by the formation of granulomas (clumps of inflammatory cells) in different tissues and organs, most commonly in the skin, lungs, and lymph nodes. Some people with sarcoidosis will have involvement of the heart, which can lead to problems such as heart failure (when the heart is unable to efficiently pump blood). Most published data on heart-related outcomes in sarcoidosis patients was either conducted several decades ago, or focused on relatively small populations. “There is a paucity of contemporary data on the risk of adverse cardiac outcomes, particularly heart failure, in patients with sarcoidosis,” the study noted. Researchers used national health databases in Denmark to identify 11,834 adults diagnosed with sarcoidosis between 1996 and 2016. For each patient, they identified four people without sarcoidosis (control group), who were matched based by age, sex, and comorbidities (diseases apart from sarcoidosis). The median age in the study population was 42.8, and 54.3% were male. Median follow-up time was just over eight years for both sarcoidosis patients and controls. The absolute 10-year risk of heart failure was significantly higher among sarcoidosis patients than controls — 3.18% vs. 1.72%. The relative risk of heart failure in the sarcoidosis group was also seen to be particularly high in the first year after diagnosis. “Sarcoidosis was associated with a higher long-term risk of incident [heart failure] compared with the background population,” the researchers wrote. Other heart-related complications were also more common in sarcoidosis patients than in controls. In particular, the absolute 10-year risk of cardiac arrest, ventricular arrhythmias (abnormal heartbeats originating in the heart’s ventricles), and the need for an implantable cardioverter defibrillator was 0.96% for sarcoidosis patients and 0.45% for controls. “Our study demonstrated that sarcoidosis was associated with a higher long-term risk of a wide range of cardiac outcomes compared with a matched population,” the researchers wrote. To better understand the prognosis of sarcoidosis-associated heart failure, the researchers matched 364 people with sarcoidosis who developed heart failure with patients with heart failure but without sarcoidosis (1,456 patients). Statistical analyses indicated that the all-cause mortality risk was significantly higher — by about 35% — in the sarcoidosis group. “Patients with sarcoidosis developing HF [heart failure] had a higher associated mortality than patients with HF without a history of sarcoidosis,” the researchers wrote. Collectively, these “results underline the need for regular monitoring of cardiac manifestations in patients with sarcoidosis,” the team concluded. Given the observational nature of this study, its researchers noted that it is not possible to draw reliable conclusions about cause and effects. Additionally, data used were incomplete in some aspects; for instance, it did not include information about individuals’ ethnicity, which is known to influence the prevalence and presentation of sarcoidosis. Diagnoses given a majority of the analyzed patients (57.3%) also did not specify the sarcoidosis location, and some may have had cardiac sarcoidosis, or sarcoidosis that specifically affects the heart. Further studies are needed, they advised. “These findings warrant further large-scale studies on the risk and prognosis associated with adverse cardiac outcomes in patients with sarcoidosis, including patients with confirmed cardiac sarcoidosis,” the researchers concluded. The post Sarcoidosis Carries Higher Risk of Heart Failure, Study Suggests appeared first on Sarcoidosis News. Link naar het originele artikel
  5. Joachim
    Taking steroid inhalers or tablets to treat asthma or control flare-ups is linked to a heightened risk of brittle bones (osteoporosis) and increased vulnerability to broken bones (fragility fractures), finds research published online in the journal Thorax. Link naar het originele artikel
  6. Linssen Roos

    Voorstellen Roos...

    Linssen Roos plaatste een onderwerp in Voorstellen

    Hallo Ik weet niet bij wie ik terecht kan.Ik ben vreselijk bang. Er is verdenking van sarcoidose bij mij ivm uveitis, ontsteking oog. Laat naar oogarts gegaan omdat ik ook aan t oog geopereerd ben, netvliesloslating ( oogarts zegt dat t er los van staat) en dacht dat t gewoon wat achteruit ging. Druppels werken niet, nu injectie met corticosteroïden gehad.Thoraxfoto was goed, bezinking en ACE is goed. Alleen il 2 receptor 3587. Mijn man is vrachtwagenchauffeur en ik ben zo bang dat als t misschien sarcoidose is, het misschien al langer aanwezig is en misschien ook in t hart... en ik ineens ( ik heb geen klachten nergens) niet meer wakker wordt en Mn kind alleen is. Heb wel last van overslagen/ hartkloppingen, al jaren, huisarts zegt dat t niks is. Nu denk ik steeds meer aan sarcoidose. Over 2 weken een longfunctie onderzoek , maar ik wil liever weten of mijn hart wel goed is? Wat kan ik doen? Maak me echt enorm veel zorgen en ben echt heel erg bang! Wachten duurt nu zo lang totdat ik zekerheid heb ..:Groeten
  7. Linssen Roos Linssen Roos joined the community
  8. Joachim
    A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800 rare disease patients and caregivers across the U.S. Results were made available in the report, “Ensuring Access to Telehealth for Rare Diseases.” Telehealth refers broadly to the use of communication technology — phones and computers — to facilitate healthcare appointments without a patient and doctor, or other professional, needing to be in the same physical space. Telehealth may offer advantages for people with rare diseases, as the number of expert health providers for a given rare disease is often limited, meaning patients can travel long distances for appointments. Indeed, 39% of the surveys’s respondents reported traveling at least 60 miles to receive medical care, and 17% had moved (or were considering relocation) to be closer to care. Rare disease patients also often take medications that compromise or weaken their immune systems, raising a risk of infection with in-person visits to hospitals or clinics, and of serious coronavirus complications. During the COVID-19 pandemic, the use of telemedicine increased dramatically as a preferred option to face-to-face appointments for care. “Throughout the coronavirus pandemic, nearly 8 in 10 rare disease patients experienced canceled medical appointments,” the report states. “Fortunately, during this time period, telehealth emerged as an increasingly common way for people to safely access medical care without risking exposure to the virus.” According to NORD’s report, prior to the start of the pandemic, about 0.01% of healthcare appointments across the U.S. were done via telehealth. By mid-April, that number had risen to two-thirds (69%) of total appointments. Consistently, rare disease patients reported accessing telehealth during the ongoing pandemic. Over 83% of these patients were offered a telehealth visit and of these, 88% accepted one. Of those using telemedicine, 92% described it as a positive experience. “We didn’t have to drive 6.5 hours in one day and were able to do it in our living room. It was awesome!” one patient is quoted in the report. “We have been able to get more doctors’ appointments in because they were doing telehealth.” Another reported feeling safer using telehealth, because they “didn’t have to go into an office” and be in contact with people who were ill. Some patients and caregivers reported more frequent healthcare appointments via telemedicine, because it removed the constraints of in-person visits. “It was great seeing my doctors without needing to go in. I have had more doctors’ appointments since COVID due to the accessibility of telemedicine,” one person responded. In addition to making routine care easier, more widespread use of telehealth could allow for greater participation in clinical trials. Survey results suggest that interest in trials is high, with 88% of respondents open to considering an investigational treatment. This is substantially higher than the 62% who voiced a similar willingness in a survey given three decades ago. Clinical trials are important, the report notes, “as approximately 90% of the 7,000 known rare diseases do not yet have an FDA-approved treatment.” “My daughter’s appointments at Boston Children’s were all canceled. Telehealth was very helpful as it allowed us to move forward with a trial drug therapy that would have been delayed another year despite her progressive decline in health,” one survey respondent said. Most (70%) taking part to the NORD’s surveys also said they would like the option of telehealth for future medical appointments. NORD has been working with other organizations to craft policy statements meant to guide policymakers on how best to aid rare disease patients with regard to telehealth, both during and after the pandemic. The group encourages people in the U.S. to send a note to their senators and representatives, asking them to extend policy changes made earlier this year that allowed greater use of telemedicine, and to protect rare disease patients in a next coronavirus relief package. “Currently, the Trump Administration, Congress and state governments are trying to decide which changes to telehealth should be made permanent beyond the COVID-19 public health emergency,” the report states. “Our continued advocacy can help on this issue so that the positive changes that we have seen during the pandemic will endure after it ends.” NORD is also continuing to collect information from rare disease patients regarding their telehealth experiences during the pandemic to be used in its advocacy work. Patients can share their experiences here. The post Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say appeared first on Sarcoidosis News. Link naar het originele artikel
  9. Markd

    Voorstellen Mark

    Markd plaatste een onderwerp in Voorstellen

    Hallo allemaal Ook ik wil me als nieuw ingeschrevene eerst even voorstellen. Ik ben Mark, 1967, getrouwd, één zoon en woonachtig in de Noordkop. Bij mij openbaarde sarcoïdose zich in herfst 2015 op de min of meer klassieke manier; de opgezette enkels. Een ervaren, gepensioneerde en dus teruggeroepen reumatoloog waar ik naar doorgestuurd was diagnosticeerde dit in minder dan 5 seconden. De man had gelijk. De term sarcoïdose zei me niets, maar toen hij Besnier Boeck noemde gingen de alarmbellen af. Mijn vader heeft dit in 1983 gekregen en is daardoor in een oog het zicht én zijn bedrijf kwijtgeraakt. De reumatoloog beloofde me dat de (optische) verschijnselen zouden verdwijnen. Ook hierin had hij gelijk. Daarna door naar de longafdeling en voila, daar waren de zwarte vlekken. Ik ben 3 jaar onder controle geweest; de ontstekingen in de longen verdwenen. Terugkomen was voorlopig niet meer nodig. Een en ander was ook goed handelbaar. Ik merkte in aanvang van het proces wel dat mijn spierkracht drastisch verminderd is. Pak 'm beet; grofweg de helft. Ik sportte veel (nog steeds) maar merkte wel dat mijn prestaties (zonder hierbij een streber te willen zijn) achteruit gingen. Waar ik eerst bij de voorste groep liep, loop ik nu hoogstens in het midden. Het gaat als een soort sinusgolf; het komt en het gaat.... de prestatie van vandaag biedt geen garantie voor morgen. Dit kan per dag verschillen. In mijn dagelijks leven is een en ander redelijk handelbaar vind ik zelf. Ik gebruik geen medicijnen, nooit gedaan ook. Ik ben gewoon fulltime aan het werk, en ik sport 3 tot 4 keer in de week en klus en lees daarnaast veel thuis. Het gaat allemaal niet meer zo gemakkelijk, wilskracht maakt het vaak mogelijk. Ik merk dat sport helpt. Daar ik de trainer ben van mijn twee coretrainingsgroepen én van een hardloopgroep is dit de stok achter de deur om hiermee door te gaan. Er is soms best wel een drempel om te gaan.... Eenmaal bezig knap ik op. Wat ik heb geleerd is dat acceptatie dat het soms (vaak) wat minder gaat zorgt dat het ook leuk blijft om te doen. Werk gaat goed; wat hierin helpt is dat ik tegenwoordig veel minder fysiek werk heb maar steeds meer beleidsmatig en beleidsondersteunend bezig ben, én dit zelf kan regelen. Het fysieke werk doe ik in de hobbysfeer thuis. Maar waar ik tegenaan loop is dat het hoofd niet altijd meer wil. Vermoeidheid is nummer één, maar in een ouder gedeelte in het forum kwam ik ook de term 'Altzheimerlight' tegen. Dit herkende ik. Lezen van stukken maar zeker ook boeken; hier moeten alle zeilen bij, Ik ben gauw de draad kwijt en dan moet de bladzijde weer opnieuw. En dit mag ik (ook) zo graag doen! Oplossingsgericht denken lukt nog steeds, alleen vaak niet meer in een split second, maar pas de volgende dag. Of nog later. Concentratie in een vergadering is een dingetje. Slapen? mwoah… dit helpt dus al helemaal niet. Zaken vergeten? nou en of! Gesprekken en afspraken terughalen? lastig....Vorm van de dag? kom ik hier zeker tegen. Mijn eerste idee dat ik bij degenen hoorde waarbij de symptomen zouden verdwijnen en ik weer door kan zoals ik het altijd heb gedaan, heb ik helaas wat moeten bijstellen. Wat ik echter op het thuisfront hoorde; mijn karakter is veranderd. Huh? niets van gemerkt... ik ben nog altijd de oude ík toch? Alleen wat eerder moe en soms wat afwezig. Offe...?? Ik zal vaak grasduinen op het forum op zoek naar ervaringen. Alleen de herkenning dat ik niet de enige ben helpt al. Als jullie dit nu ook blijven delen, deel ik de mijne. Oplossingen vinden zal niet lukken, openstaan voor ervaringen en daaruit leren mogelijk wel. Ik kijk uit naar jullie reactie. Mvrgr Mark
  10. Earlier
  11. Joachim

    Finding Support in the Unlikeliest Places

    Joachim plaatste een onderwerp in Nieuws

    A best friend from high school occasionally stops by to let my wife and me know what’s going on in her life and to check on my health. We all sit on my porch — socially distanced, of course — with cocktails in hand while we’d catch up. She lives in Deleware, but recently she put her house on the market so she could move back to Philly, where we live. This past Sunday, my wife left for Deleware to help her pack up. The trip was welcome news for our family, for no other reason than that she needed a break from us, and us from her. Strike while the fire is hot! My wife and I still needed to fulfill our Sunday tradition of shopping at the local market with my mother-in-law. My wife was planning on leaving at 3:30 p.m., so that left little time for shopping. I was ready to get moving. Since I was cooking dinner and wanted fresh veggies to accompany my dish, we went to a produce place before hitting a small market. The produce place was somewhat crowded, as expected. I decided not to carry my portable oxygen inside since the store is relatively small. I was able to get my needed product and get checked out before my mother-in-law realized we were leaving the store. Being the wonderful husband I am, I decided to stop across the street at the gas station to fill up. Realizing that every minute counted toward a quick shopping experience with my two “angels,” I was well on my way to winning this battle. Finding support in the unlikeliest places. We didn’t need a lot of groceries so I didn’t envision being in the other market for an extended period of time. Just in case I needed a Plan B, though, I grabbed my portable tank. As my wife and her mom finished gathering items, I went ahead and got in line — my little trick to hurry them along. There were two people ahead of me, one with a full cart, so I figured they had a few extra minutes before I reached the cashier. While zoning out, I heard someone say, “You’ll be all right, bro.” I turned around and a man in line behind me pointed to my oxygen tank in the cart. He repeated, “You’ll be all right.“ I thanked him and said, “I’m trying.” He told me he had a double-lung transplant in February and used supplemental oxygen from time to time. He said he suffered from COPD, and I told him that I had multiple spontaneous pneumothoraces caused by pulmonary sarcoidosis. “You’re moving around well without any oxygen,” I said. “That’s what you gotta do — keep moving!” I told him I was in the Temple Lung Center, and he mentioned that he was, too. I asked who his doctor was, and he mentioned Dr. Criner. I told him that Dr. Criner placed my endobronchial valves. We laughed at the connection. We chatted a little bit more before it was my time to checkout. We nodded and gave each other a thumbs-up. As I approached the cashier, I heard him say; “Keep with it, you’ll be all right.” I told him that’s why I go to the gym every day. He laughed again, gave me another thumbs-up, and said, “That’s right, you gotta keep moving … you gotta keep moving.” *** 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 Finding Support in the Unlikeliest Places appeared first on Sarcoidosis News. Link naar het originele artikel
  12. Joachim
    People with coexisting sarcoidosis and inflammatory bowel disease (IBD) have higher in-hospital rates of respiratory failure, but lower colon surgery rates and gut penetrating disease, than those with IBD alone, a large-scale patient record analysis found. The authors recommended more genetic and clinical studies to better understand the interaction between sarcoidosis and IBD. The analysis was described in the study, “Sarcoidosis is associated with lower risks of penetrating disease and colectomy in hospitalized patients with inflammatory bowel disease,” published in the journal JGH Open. Sarcoidosis is a disease characterized by an over-active immune system that triggers the formation of small clumps of inflammatory cells called granulomas in different organs, including the lungs, liver, heart, bones, muscles, and digestive tract (gut). There is increasing evidence supporting a link between sarcoidosis and IBD, in which the two most common forms are Crohn’s disease and ulcerative colitis. Crohn’s disease presents as inflamed areas throughout the digestive tract, commonly in the small bowel, whereas ulcerative colitis is inflammation and ulceration within the colon and rectum. However, little is known about a real-world clinical connection between these two conditions. To investigate further, a team of researchers at Rutgers New Jersey Medical School analyzed patient records in the Nationwide Inpatient Sample (NIS) database, the largest all-payer inpatient database in the U.S. Information on adults ages 18–90 was collected if they were hospitalized with both sarcoidosis and IBD, or IBD alone (comparison group). The primary outcomes analyzed included length of hospital stay, in-hospital mortality, treatments, and disease-related complications. In total, the team identified 3,995 IBD patients diagnosed with coexisting sarcoidosis, of whom 2,500 had Crohn’s disease and 1,495 had ulcerative colitis. Records for an equal number of patients with IBD alone were collected.Participants with sarcoidosis and IBD had an average age of 54.5, of whom 64.8% were women. The analysis revealed significantly lower colectomy rates, which is the surgical removal of all or part of the colon, among patients with both conditions, than in those with IBD alone — 2.4% vs. 4.9% in the IBD only group. Patients with sarcoidosis and IBD also had significantly lower rates of penetrating disease (1.8% vs. 5.6% in the IBD-only group); penetrating disease is a condition characterized by the development of gut perforations, abscesses, or abnormal intestinal connections called fistulas.In contrast, people with the two conditions had a higher rate of respiratory failure (8.1%) than those with IBD alone (4.5%). In patients with coexisting conditions, there were non-statistically significant lower rates of hospital mortality, malnutrition, bowel obstruction, and ileostomy (a procedure to connect the bowel to an opening on the skin). No differences were found between the groups in terms of septic shock rates, acute renal failure, and length of hospital stay. Statistical analysis taking into account several factors found a significantly higher respiratory failure rate in those with sarcoidosis and IBD, compared to patients with IBD alone, and an association with a significantly lower rate of penetrating disease and colectomy. A secondary analysis compared subjects with Crohn’s disease and sarcoidosis to those with Crohn’s disease alone. Again, there were lower rates of penetrating disease (2.8% vs. 9%) and colectomy (1.6% vs. 3.8%) in people with sarcoidosis and Crohn’s disease compared to Crohn’s disease alone. Furthermore, patients with sarcoidosis and ulcerative colitis had a significantly higher rate of respiratory failure and colectomy, compared to ulcerative colitis alone. “The association of sarcoidosis with less penetrating disease and colectomy in IBD patients is incompletely understood and not previously reported,” the researchers wrote. The authors proposed several explanations, including the possibility that the coexistence of sarcoidosis may impact IB disease subtypes. “Prospective studies at the genetic and clinicopathological levels will assist in gaining a better understanding of the mechanism of the interaction between IBD and sarcoidosis,” the team concluded. The post Study Furthers Understanding of Links Between Sarcoidosis and IBD appeared first on Sarcoidosis News. Link naar het originele artikel
  13. Markd Markd joined the community
  14. Wikash Debi Tewari Profielfoto van Wikash Debi Tewari is gewijzigd
  15. Jolanda Blom Profielfoto van Jolanda Blom is gewijzigd
  16. Joachim

    Tuning Back Into Happiness

    Joachim plaatste een onderwerp in Nieuws

    Bad habits usually sneak up on me. I glide along thinking I’m in control until I get hit with the realization that I’m not. That moment arrived for me on a recent morning when I decided to skip the news. It shouldn’t have been a big deal. But eating breakfast without watching the latest broadcasts left me feeling out of sorts. As the day carried on, I became aware that I check clocks a heckuva lot. Even more disturbing is that for me, they had become digital countdowns to the next newscast. That made me face a hard truth: I had crossed the line between something being a part of my life and actually ruling it. It’s a balancing act I know well from managing sarcoidosis. As I struggled to get through the day without news, a line from one of my favorite “Will & Grace” episodes came to mind: “I’m no expert, but I think you have a little addiction problem.” You can view the scene here to see why it made me laugh so hard. Last year, I wrote about my tendency to sometimes let my health eclipse everything else in my life. I call it “survival mode” when my sole focus becomes staving off the worst. In my quest to stay informed during the pandemic, I landed there again. A weekend getaway with my sister, Antonia, helped me break the cycle last June. This time around, a self-imposed moratorium on news did the trick. Roughly 6 in 10 Americans are following local and national reports about the coronavirus outbreak, according to a Pew Research Center survey conducted in April. There’s a popular saying about media coverage, “If it bleeds, it leads.” Tuning in means being subjected to a lot of negative stories, and not just about the pandemic. With each passing hour without television, I realized the toll it had taken. For the first time in months, my thoughts were consumed with happier things. A heart-warming message from my godmother earlier that day. The memory of looking over Boston Harbor with Antonia last summer, a gentle breeze rolling over us. The canopy of vibrant fall leaves hanging over the roads near my former condo, which I looked forward to driving through each year. A weekend getaway to Boston Harbor with her sister renewed columnist Athena Merritt’s spirit last year. (Photo by Athena Merritt) I know that eventually I’ll return to the news. But for now, I just want to bask in thoughts, moments, and experiences that make me feel good. *** 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. Sprouting friendships: Two California surfers have created a free app that connects people who want to swap plants and produce, CBS8 reported. The app, called Blossm, sprouted to 800 users across the U.S. after just five weeks. Co-founder Brian Feretic got the idea after swapping plants himself. Users can search for swaps by location, view pictures of available plants, clippings, and produce, and message each other. Download Blossm here. Forever young: The Young@Heart Chorus, whose members range in age from 77 to 92, released a new album this month, according to the Boston Globe. The chorus was founded in 1982 to help residents of elderly housing pass time. Their rock-oriented repertoire ranges from Rolling Stones classics to rap to appeal to a variety of age groups and communities, the newspaper said. You can buy the album and see their virtual benefit concert at youngatheartchorus.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 Tuning Back Into Happiness appeared first on Sarcoidosis News. Link naar het originele artikel
  17. Jim Keyram Jim Keyram joined the community
  18. Wikash Debi Tewari Wikash Debi Tewari joined the community
  19. Joachim
    Floating in fluid deep in the brain are small, little understood fronds of tissue. Two new studies reveal that these miniature organs are a hotbed of immune system activity. This activity may protect the developing brain from infections and other insults—but may also contribute to neurodevelopmental disorders like autism. Link naar het originele artikel
  20. Joachim

    Leaving the Unhealthy Behavior Behind

    Joachim plaatste een onderwerp in Nieuws

    My wife, my son, and I moved into our house in August 1996. The house initially belonged to my aunt, who lived there since 1982, the year my wife and I graduated from high school. When my aunt and uncle went on trips, I was tasked with taking care of the house. I’ve always felt the house was mine. I guess that’s because I was extended an open invitation anytime I wanted to hang out with them. They are still my coolest relatives from both sides of the family tree. So, it seemed natural for me to buy the house when they wanted to move. A few years earlier, they had been involved in a serious car accident that made walking up steps a chore and an inconvenience. It was time to move, and I was ready to put some skin in the game as a responsible homeowner. Everything went off without a hitch, and I was well on my way to adulting. I better strap up because this is going to be a ride like no other, I thought at the time. Boy, was I right. My next-door neighbors were Jack and Barb. They were a really cool couple, and like my aunt and uncle, they kept their door open for us. My uncle used to tell me stories about Jack back in the day, when he was a practicing attorney. Jack used to throw wild parties that everyone in the neighborhood looked forward to attending. When I mentioned the parties to Jack, he just laughed and said, “Boy, those were the days!” Jack had slowed down a lot. He retired from law partially because of his health, particularly a bad case of emphysema. I remember him smoking for as long as we’d been neighbors. He’d been a patient at the same lung center I’m now affiliated with. But at the time, I didn’t understand the extent of his health issues. While chatting in our backyards over cocktails one day, Jack explained the extent of his emphysema and told me how he was trying to get into a program at the lung center I’m currently with, to possibly help his condition. I remember being afraid for him as he explained his shortness of breath and occasional fatigue. Who would’ve imagined that years after that conversation, I would experience similar issues due to pulmonary sarcoidosis? Throughout our friendship, Jack never stopped smoking. I often thought that if he had, it could have helped improve his quality of life. Eventually, his wife moved to Florida, and left him alone with their dog. Some people would come by and check on him, but I eventually became a support person for him. My family and I took him to his doctors’ appointments and shopping for essentials. We also often sat with him so he wouldn’t feel alone. I remember several occasions when he would smoke while wearing oxygen. As his next-door neighbor, that made me very concerned. He was a true daredevil. The less you ask, the more you find out I believe everyone facing a serious health issue has personal vices or obstacles that may get in the way of healing. Sometimes we acknowledge them head-on, while other times we convince ourselves that they’ll pass, that we’ll get through it on our own, in our time. More often than not, the stress we live with may trigger those vices. Truth be told, I have my share of vices I need to put on the shelf and leave them there. Sometimes I believe the lies I tell myself that they’re not that bad, or that I’ll get it together tomorrow. Either way, I’m responsible for the outcome of my health regardless of my behavior or my self-imposed deception. It’s time to grow up. Clearing the shelf Jack passed away a few years ago doing and living exactly how he wanted to. Could handling his vices differently have made a difference? Possibly. We all have those urges that keep us from moving ahead in life because we find comfort in them. They’re familiar and safe to us. They’re the security crutch we’ve leaned on that does us no good. When you think about it, they keep us tethered to the past, which keeps us stagnant. “As a dog returneth to his vomit, so a fool returneth to his folly.” – Proverbs 26:11 “When I was a child, I spoke as a child, I understood as a child, I thought as a child. But when I became a man, I put away childish things.” – 1 Corinthians 13: 11 It’s time to put the vices away! *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Leaving the Unhealthy Behavior Behind appeared first on Sarcoidosis News. Link naar het originele artikel
  21. Joachim
    Kidney involvement, heart wall abnormalities, and left heart failure were identified as risk factors for a relapse of cardiac sarcoidosis, a long-term study involving more than 150 patients suggests. Immunosuppressant treatment with cyclophosphamide was also linked to a significantly lower risk of cardiac relapse in this patient population. The study “Cardiac sarcoidosis: A long term follow up study” was published in the journal PLOS One. Cardiac sarcoidosis (CS) — sarcoidosis in which the heart is affected, either solely or as part of more systemic disease — is estimated to occur in 5 to 11% of sarcoidosis patients. Autopsy studies, however, report that cardiac involvement is found in 25% of patients. In the U.S., cardiac sarcoidosis is believed to be responsible for 25% of deaths in sarcoidosis patients, and for 85% in Japan, the study noted. Factors influencing outcomes for people with cardiac sarcoidosis, especially when CS is clinically silent (meaning no clear disease manifestations), remain unclear. Researchers in France investigated prognostic factors that might influence outcomes like survival and relapses in a large group of CS patients, and the effects of immunosuppressive therapies on the relapse risk. In total, the team analyzed 157 patients with CS, median age of 40, who were followed for a median of seven years (range from 6 months to 32 years). All met WASOG criteria for a cardiac sarcoidosis diagnosis. Cardiac manifestations occurred before sarcoidosis diagnosis in 15 patients (10%), at the time of diagnosis in 54 others (34%), and post-diagnosis in the remaining 88 people(56%). Forty-three percent of these CS patients had systemic sarcoidosis symptoms, and 135 patients (86%) had two or more extra-cardiac sites affected by the disease, including mediastinal lymph nodes and/or the lungs (89%), nervous system (42%), skin (31%), peripheral lymph nodes (30%), eyes (29%), and joints (24%). Heart involvement was present in all 157 patients analyzed, including ventricular block in 48 of them (31%). Imaging of the heart using echocardiography revealed heart abnormalities in 98 patients (62%), such as heart wall motion abnormalities, and a cardiac MRI was abnormal in 68 out of 91 patients (75%). Ninety-two people were taking steroids alone or in combination with immunosuppressive agents (120 participants), including 79 who were using intravenous cyclophosphamide (brand names, Cytoxan and Neosar). Overall, the survival rate at five years after a CS diagnosis was 93.6%, and 89.6% at 10 years post-diagnosis. During follow-up, 13 out of these 157 patients died, with death attributed to CS in four cases. Analysis of clinical data showed that older age, a left ventricular ejection fraction (LVEF) below 40%, hypertension (high blood pressure), an abnormal pulmonary function test, and the presence of scar (fibrotic) tissue on a cardiac MRI were risk factors associated with mortality in this CS patient group. Of note, LVEF measures how much blood is pumped out of the left large chamber, or ventricle, of the heart with each contraction. Most patients (101) had at least one sarcoidosis-related event, including 63 cardiac relapses and 88 non-cardiac relapses. Across 10 years of follow-up, this corresponded to an overall relapse-free rate (both cardiac and non-cardiac) of 27.4%. A statistical analysis showed that kidney involvement, left heart failure, and abnormalities at the heart wall on echocardiography were risk factors for cardiac relapses. Researchers also assessed the impact of immunosuppressive agents, “often used in refractory cases and/or if steroid side effects,” on cardiac relapses. Results showed that only cyclophosphamide was associated with a significant decrease in the risk of cardiac relapse, compared with no treatment, among the various immunosuppressants evaluated. However, “analyses on treatments should be interpreted with caution as treatments were not randomised (possible confounding factors), and sample sizes of some treatment were small (under power),” the study noted. These results suggested that the mortality rate related to CS was low, and linked to “older age, arterial hypertension, abnormal pulmonary function tests, low LVEF and abnormalities in cardiac MRIs,” the researchers wrote. “Immunosuppressive therapy with intravenous cyclophosphamide is associated with lower relapse rates and might be especially of interest when predictive factors of poor outcome or relapses are present,” they added. Researchers also noted that their results should be confirmed in randomized, controlled trials. The post 3 Factors Seen to Raise Risk of Cardiac Sarcoidosis Relapse in Multi-year Study appeared first on Sarcoidosis News. Link naar het originele artikel
  22. Joachim
    An international collaboration involving researchers from the Luxembourg Center for Systems Biology (LCSB) at the University of Luxembourg established an association between inflammation and specific genetic mutations in Parkinson's patients. The study, recently published in the scientific journal Brain, highlights two biomarkers that could be used to assess Parkinson's disease state and progression. The results also suggest that targeting the immune system with anti-inflammatory medication holds the potential to influence the disease course, at least in a subset of patients. Link naar het originele artikel
  23. Joachim
    Ganoderma lucidum, known as the yeongji mushroom in Korea and reishi or lingzhi elsewhere, is considered a modern-day elixir and has long been used medicinally in China, Japan and Korea. Ganoderic acid, an active ingredient found in the mushroom, is known for its excellence in enhancing the immune function of cells. Due to the hard texture of the mushroom, it has been ingested in powder or liquid form, but it has been noted that the active ingredient is destroyed when the mushroom is dried for an extended period of time or the extraction is performed at high heat (80 °C or higher). Link naar het originele artikel
  24. Joachim
    Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions to 24, for the voting public to select among. The calendar will feature the top dozen vote-getters, and the submission that garners the most votes will be displayed on the front cover. The overall winner’s photographer will also get a Polaroid Snap camera. “What a privilege it has been to see all of your photographs roll in,” Same But Different states on its website about the contest themed “A Glimmer of Hope.” The photo competition is a way to visually express the hope that exists for individuals living with rare disorders. The contest, open to all but professional photographers, allowed participants to submit an unlimited number of photos until Sept. 22. The only requirements were that images be high resolution, and made in landscape mode suitable for calendar display. Photos were judged for their composition, skill, originality, public appeal, relevance to the theme, and suitability for inclusion. While contestants retain copyright over their work, the organization reserves the right to publish and exhibit their photos. The public is now being asked to scroll through the gallery and vote for their 12 favorites. In a photo titled “Silly,” an ALS patient in a wheelchair surrounded by foliage smiles as a man bends to kiss her forehead. The black and white photo is by Kyndra Peterson, diagnosed in 2019. “This past year since her diagnosis has been the hardest year of our lives. There have been so many tears … but there has also been laughter. Laughter, smiles, hugs, stories, dreams, and most of all, hope,” her entry reads. Another photo, by Joshua Hagan, is a gleeful boy with Duchenne Muscular Dystrophy who is wet and slightly muddy from running through a lawn sprinkler. Another by Susan Hallmark shows a young boy with Prader-Willi syndrome peering through door windows, eagerly awaiting his ride to school and a chance “to see his friends again” after the COVID-19 lockdown. The Glimmer of Hope calendar may be pre-ordered at a discount for £9.50 (about $12.34) until Oct.12. Proceeds will go to the nonprofit organization’s Rare Navigator, a resource that offers information, and emotional and practical support to patients with rare diseases and their families. Over the past two years, Same But Different has exhibited works in dozens of locations, and presented images in a variety of publications. The nonprofit organization aims to use art for positive social change by working with communities, organizations, and individuals to highlight inequalities and bring communities closer together. The post Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos appeared first on Sarcoidosis News. Link naar het originele artikel
  25. Joachim

    The Not-So-Obvious Threats to Lung Health

    Joachim plaatste een onderwerp in Nieuws

    After being diagnosed with pulmonary sarcoidosis, I became a pro at protecting my lungs. Or so I thought. Even now, 18 years later, I’m still discovering threats I had overlooked. October is “Healthy Lung Month” in the U.S. Leaving my pulmonologist’s office all those years ago, I thought I had lung wellness down: Don’t smoke, make sure to exercise, get regular checkups. But potential respiratory hazards don’t always come from obvious places. Rolling along in ignorance For instance, a musty odor coming from my car vents last week made me think about replacing the cabin air filter. Turns out, it should be changed every 12,000 to 30,000 miles, depending on your car and driving habits, carfax.com said. The filter keeps contaminants like dust, smog, pollen, and exhaust fumes from spewing inside. People like me, with allergies and respiratory issues, should consider changing it as frequently as every 5,000 miles, the site recommended. Brushing up on prevention This is also “National Dental Hygiene Month.” I know some chose to skip the dentist this year, but I didn’t. I was 10 years into managing sarcoidosis when I learned about the link between oral health and overall wellness. I was being treated for dry mouth caused by the dozen or so medications I was on, when my dentist told me the risks. Oral hygiene and saliva both play roles in keeping harmful bacteria at bay that can lead to health issues, as the Mayo Clinic explained. Endocarditis and cardiovascular disease are among the conditions poor oral health can contribute to. Connections with pulmonary disease, specifically chronic obstructive pulmonary disease and pneumonia, have also been found, according to an article published in the British Dental Journal in 2017. That’s why seeing my dentist every six months, even in the midst of a pandemic, was important to me. Seasons of sneezing Allergies, which I wrote about in spring, is another area where I dropped the ball. I didn’t find out until last year that my year-round misery was being caused partly by dust mites. Dust mites are “one of the most common indoor allergens” and can trigger asthma and other symptoms, the American College of Allergy, Asthma and Immunology said. Finding out led to numerous changes, including washing my sheets in hot water instead of cold. In making changes to combat allergies, I discovered that materials in bedding also carry risks. Long-term exposure to feathers can cause an inflammatory response in the lungs in some, called feather duvet lung, according to the Cleveland Clinic. It can result from goose or duck feathers in linens and even feathers and droppings from pet birds, they warn. We can’t control the pathway of our sarcoidosis. But we can make every effort to protect our lungs, which are affected in more than 90 percent of us. I’m still discovering ways to do that. If you know other less obvious risks, please let me know. *** 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. Gearing up for sarcoidosis: The Foundation for Sarcoidosis Research is selling new gear to raise awareness about sarcoidosis and to support their mission. Mugs, water bottles, face masks, drawstring bags, wristbands, and assorted apparel are available at the foundation’s online store, launched last month. Complimentary comedy: Montreal’s 38th Just For Laughs comedy festival will be all-virtual and free this year, the Montreal Gazette reported. The event on Oct. 9 and 10 will feature multiple virtual comedy rooms, panels, and podcast tapings. More than 100 artists are taking part, including JFL co-owner Howie Mandel, Sarah Cooper, Kevin Hart, Chelsea Handler, and Judd Apatow. More details are available at JFL’s website. Enduring wiseguys: Martin Scorsese’s gangster flick “Goodfellas” turned 30 last month. Glenn Kenny’s new book “Made Men” provides a behind-the-scenes look at the making of the film, which chronicled the rise and fall of mobster Henry Hill. Some of the more interesting gems include a push to cast Tom Cruise as lead and Madonna as Karen Hill, collider.com reports in the article “‘Goodfellas’: 10 Things You Never Knew About Scorsese’s Masterpiece Revealed in New Book.” *** 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 The Not-So-Obvious Threats to Lung Health appeared first on Sarcoidosis News. Link naar het originele artikel
  26. Joachim
    Researchers have used "omics" data containing genetic profiles of drugs to identify the hormone oxytocin as a possible treatment for COVID-19, the disease caused by the novel coronavirus (SARS-CoV-2). The study is published in Physiological Genomics. It was chosen as an APSselect article for October. Link naar het originele artikel
  27. Fokke Cats Fokke Cats joined the community
  28. Helen R
    Ter aanvulling hier de Nederlandse studie. https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-020-01409-w
  29. Helen R
    Ik ben zo blij dat dit opgepikt wordt!!! Lieve mensen met een kat. Ik ben ziek geworden door de silica in kattengrit. Ik ontwikkelde astmatische klachten in de afgelopen 6 jaar en een stevige productieve aanhoudende hoest. In januari begin dit jaar had ik ineens nul conditie. 6 huisarts afspraken verder. Eind mei doorverwezen. Half augustus diagnose Sarcoidose. Mijn klachten zijn tijdens het thuiswerken verergerd. Makes sense now. Ik heb letterlijk 8 uur per dag in een ruimte gezeten van 20m2 met een kattenbak.. Ik werd zieker en zieker. Op een dag werd ik zo benauwd en toen zag ik het verband ongeveer een week later. Ik had de kattenbak verschoont.. Ik heb de proef op de som genomen en de kattenbak verschoont en werd binnen een half uur direct benauwd. De arts zei dat silica en silicium inderdaad de trigger kunnen zijn. Ik voelde mij alsof weer helemaal terug bij af was. De kattengrit is het huis uit en hebben een alternatief gevonden. Ik ben half augustus gestart met 40mg prednison. De eerste foto laat verbetering zien. Eind oktober weer controle. Ik merk echt verbetering sinds het grit de deur uit is en hoop dat het straks ook echt wegblijft en aan dit rare verhaal een goed of beter einde komt!!
  30. Helen R

    Voorstellen Helen

    Helen R plaatste een onderwerp in Voorstellen

    Goedenavond, Ik ben Helen. 34 jaar. Ik heb half augustus de diagnose Sarcoidose gekregen. Longen. En we hebben de trigger gevonden. Kattengrit.. met silica en silicium.. Ik heb dit gedeeld met sacoidnetwork en ga ook contact opnemen met een arts die onderzoek doet in Nijmegen naar het verband bij mensen die werken met silica, silicose en sarcoidose. Dus heel goed om te zien dat deze berichten heel goed opgepakt worden!! Ik probeer ingrediënten lijsten te achterhalen bij leveranciers en dit is erg lastig. Heb zelfs een verzoek bij de NVWA ingediend.
  31. Helen R

    Voorstellen Helen

    Helen R plaatste een onderwerp in Voorstellen

    Goedenavond, Ik heb half augustus de diagnose Sarcoidose gekregen. Longen. En we hebben de trigger gevonden. Kattengrit.. met silica en silicium.. Ik heb dit gedeeld met sacoidnetwork en ga ook contact opnemen met een arts die onderzoek doet in Nijmegen naar het verband bij mensen die werken met silica, silicose en sarcoidose.
  32. Helen R Helen R joined the community
  33. Joachim
    In February, I wrote that sarcoidosis doesn’t play fair. Over the past few days, I’ve thought about that column. It is spooky, but true: Sarcoidosis is a crafty annoyance that keeps you mentally alert. Stay vigilant! This week, I “organized” my studio area. My wife would say I was just shuffling junk from point A to point B. But as any self-sufficient, conscientious man would say, “I was cleaning!” While making progress, I came across a box of old family photos that I inherited when my mom passed. Some were taken before I was born, and some when I was very young. As I continued to look, I saw pictures I took when the photography bug bit me. I can’t describe all the emotions that hit me. It was one of the best moments I’ve experienced in a long time. It was even more special considering the socially distanced way we’re currently living. Most of the family members pictured are gone, but the memories we shared are indescribable. Memories This is how sarcoidosis plays on your emotions. One minute, you feel good, and the next, you recall a moment that had a lasting impact on your life. All the while, you try not to feel guilty about the direction your life took. Remember, this condition we have is no fault of ours. That’s life. I was diagnosed with pulmonary sarcoidosis a month or two after my mother suddenly passed. Two weeks prior to her passing, she accompanied me to the hospital for an outpatient procedure that may have been related to sarcoidosis, but who knew at the time? I don’t think about that memory often, but for some reason, I did on this day. When I thought about that day at the hospital, I started laughing. My mom was a character. She had the temperance and humility of a mother, but the edge of a really cool dad. To this day, her memories keep me laughing, which is why I have to keep life moving. She did, even after her heart surgery. Don’t feel guilty for moving on After my mom’s passing and my diagnosis, my main concern was getting my mom’s affairs in order. That took about a month, and in the meantime, I had to deal with sarcoidosis. But I forgot all about it. I had to get back to my life and restructure my sense of normalcy. Neither was easy. I just knew I needed to get back into the game, or I’d be swallowed by a sea of self-pity, regret, guilt, and emotional paralysis. Once the dust settled and my life adjusted, I got back into the game. But it was no surprise that life got in the way, and more adjustments had to be made. Good, bad, or otherwise, I’m still here, and I don’t think it’s by accident. I don’t think any of us are dealing with sarcoidosis by accident: We all have a story to tell. The past can be comforting Looking at the old photos was more than special. I needed to find them when I did to get back on track. I saw pictures of my grandparents, aunts, uncles, cousins, and my mom growing up in the South before they moved to Philadelphia. I even have pictures of me on a tractor plowing a field with my uncle. While looking at the memories, it struck me that my family never let any obstacles or setbacks stand in the way of their growth and progress. As they got older, health issues became apparent. They took care of themselves and, like me, kept moving. They weren’t so naive as to believe that a chronic health condition would resolve on its own, but they didn’t own the condition as theirs. It was just something they lived with. It was the card they were dealt, and they adjusted their lives accordingly. I felt rejuvenated looking at the photos and reminiscing about my life and fun times with family. I’m not 8 or 16 years old anymore. I’m 56. I can’t run in a field or chase my cousins with firecrackers, but at 56 I have experienced childhood joys and adult issues that most will never know. There are some things I can’t do, and some I take my time doing, but at least I can tell the world I picked cotton, I drank water from a well, I chased pigs, and I learned to ride a bike in a sand driveway. I have the pictures to prove it. But most importantly, I know what it means to keep moving while enjoying my life. (Photo by Charlton Harris) *** Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis. The post Family Memories Remind Me That Sarcoidosis Doesn’t Own Me appeared first on Sarcoidosis News. Link naar het originele artikel
  34. Joachim
    Exposure to inhaled silica dust appears to increase the risk of sarcoidosis among men 20 to 65 years old, according to a recent study from Sweden. Men 35 and younger, and older men with more than six years of regular exposure to the dust saw the highest risk. The study, “Sarcoidosis and silica dust exposure among men in Sweden: a case–control study,” was published in the journal BMJ Open. Sarcoidosis is an inflammatory disease that can significantly affect the lungs. Its root cause remains unclear, but many scientists believe exposure to environmental factors play a key role. Silica dust, produced in masonry, mining, and glasswork, among other activities, has been proposed as one such factor, although few studies have investigated it. One of those studies, conducted by the authors of the current study, suggested that exposure to silica increases the risk of sarcoidosis in iron foundry workers. The researchers now investigated further the possible link between silica exposure and sarcoidosis by comparing records in Sweden’s National Non-primary Outpatient Care Register to people’s occupations in the Swedish Occupational Register. Data from 2007 to 2016 were analyzed for individuals age 20 to 65 diagnosed with sarcoidosis. Researchers selected 3,663 sarcoidosis cases and 7,326 controls (two controls per case, matched by age and sex), all of whom were men. The mean age of cases and controls was 44.7 years. Of note, the team found only 48 sarcoidosis cases among women, which proved too few for meaningful analysis so they were excluded from the study. In total, 13.9% of men diagnosed with sarcoidosis had been exposed to silica dust in their occupation within the five years prior to diagnosis, compared to 11.3% of controls. This risk increased significantly in men diagnosed before turning 35 — 1.48 times greater risk. “Exposure to respirable silica dust seems to result in an increased risk for developing sarcoidosis in men. For men of an age of 35 years or younger the correlation was statistically significant stronger than in older men,” researchers wrote. For men older than 35 with exposure of more than 10 years to silica, the likelihood of developing sarcoidosis was 1.44 times higher. Researchers found that two to 10 years of exposure to silica dust appeared to significantly raise the risk of sarcoidosis. Although this risk continued to rise with 11 years of exposure or more, such increase was not statistically significant. “Exposure to respirable silica dust statistically significantly increase the [likelihood of developing] sarcoidosis, but neither the cumulative nor mean exposure show a statistical significant dose–response association,” the researchers wrote. How silica dust might cause sarcoidosis remains unknown. The team suggested it could trigger an immune response in genetically predisposed people, noting that silica exposure is associated with autoimmune diseases such as rheumatoid arthritis, systemic lupus erythematosus, systemic scleroderma, and antineutrophil cytoplasmic antibody-related vasculitis. Overall, the team concluded that “exposure to respirable silica dust increases the risk of sarcoidosis among men between 20 and 65 years of age,” and that “the risk seems to be higher among exposed men 35 years or younger and older men with longer exposure (more than 6 years).” Further studies that take into account confounding factors such as smoking are needed to confirm the findings, they stated. The post Swedish Study Links Exposure to Silica Dust to Increased Risk of Sarcoidosis appeared first on Sarcoidosis News. Link naar het originele artikel
  35. Joachim
    I went to bed in the fourth quarter of “Monday Night Football” with my brother Antony’s words haunting me. My favorite team was losing, and I knew what he’d say about abandoning them for sleep: “There’s a lot of game left.” Antony believes in comebacks, and so do I, particularly when it comes to sarcoidosis. I woke up the next morning wondering if I had missed a glorious comeback by the New Orleans Saints. That’s the risk with bailing early. I’ve watched my brother, his forehead crinkled and eyes tight with concentration, believing in wins. Not even being down three touchdowns with less than five minutes remaining shakes his resolve that “his” Pittsburgh Steelers will prevail. Sitting on his cushy couch in Florida, which was a winter escape for my achy joints, I remember him telling me once, “I don’t know how you do it.” After rebounding from Lyme disease, my journey with sarcoidosis began two years later. To him, it was like I was shouldering all of the health issues our family had escaped. Just like my brother clings to hope until the game clock runs out, I get by clinging to hope, too. Athena’s brother Antony, a Pittsburgh Steelers fan, accompanies her to a game between the New Orleans Saints and the Tampa Bay Buccaneers in late 2018. He even wore a Saints jersey! (Courtesy of Antony Merritt) Sarcoidosis is an inflammatory disease that can pop up anywhere in our bodies. More than half of us are dealing with a trio of symptoms that have been “historically unrecognized consequences” of this rare illness. These include: fatigue (70–80%) small-fiber neuropathy (30%) cognitive impairment (35%) That’s according to the study “Disease Burden and Variability in Sarcoidosis,” published in the journal Annals of the American Thoracic Society in 2017. So what do we do? We push on. We multitask. We have to because we face unpredictable days. We manage life around our symptoms. Many, like me, have become adept at cramming errands in before fatigue conquers us. We are resourceful. Cognitive impairment, small fiber neuropathy, and debilitating exhaustion aren’t visible, but they are among the many unseen challenges we regularly face. We squeeze responsibilities into doable chunks and keep on. We find ways to overcome our fears, worries, and insecurities. Googling the Saints, I wondered if they had pulled off a win after all. They hadn’t. But that’s OK. I’ll be back, well-rested and watching on Sunday, full of hope. *** 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. Penny for your art: For artist Bryanna Maria, a 19-millimeter-wide canvas will do just fine. The self-proclaimed minimalist creates intricate oil paintings of landscapes on the back of pennies, Caters News Agency reported. You can check out and buy her awe-inspiring works at brymariearts.com. Autumn leaves: SmokyMountains.com has created an interactive map to help travelers catch the peak color of fall leaves in the U.S. Prime leaf-peeping spots in New Hampshire, Colorado, Pennsylvania, and other areas can also be viewed live online, according to Mental Floss, which offers a list of webcams. *** 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 Hope Carries Me Through Chronic Disease Challenges appeared first on Sarcoidosis News. Link naar het originele artikel
  36. Joachim
    A study from the University of Pittsburgh School of Medicine and Cedars-Sinai addresses a mystery first raised in March: Why do some people with COVID-19 develop severe inflammation? The research shows how the molecular structure and sequence of the SARS-CoV-2 spike protein—part of the virus that causes COVID-19—could be behind the inflammatory syndrome cropping up in infected patients. Link naar het originele artikel
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