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  1. Gisteren
  2. If your supermarket routine is like mine, you zip in and out of stores without doing a lot of leisurely reading. So, you probably hadn’t noticed that the Nutrition Facts label on packaged foods has changed. Yep, back in January. The U.S. Food and Drug Administration even launched a campaign to highlight the first revamp of labels in more than 20 years. The problem is it rolled out in March, right around the time most of our minds were on hand sanitizer, disinfecting wipes, and COVID-19. If you haven’t already, slow down and take a look at the new labels — it could benefit your health. Blueprint to better health Manufacturers with $10 million or more in annual food sales are now required to use the new labels, while those with fewer sales have until Jan. 1, 2021 to implement them. I frequently consulted nutritional information to help guide my decisions when buying food in the past. It became a regular habit again when my usual food brands began disappearing from shelves and I became a vegetarian. When it comes to managing my sarcoidosis and overall health, the new changes are useful. Calories I’ve been on both ends of the scale — watching calories to avoid weight gain while taking prednisone and trying to pile them on to combat weight loss from health battles. Information on calories is now more visible thanks to larger, bolder print on labels. Serving size A larger, bold font is now being used to better display serving size, which also has been updated to reflect what people typically consume (instead of what they should consume). That’s good news for those of us fooled into eating something we thought was healthy only to realize the calories were based on a portion more appropriate for a toddler. Packages containing 2-3 servings, which could realistically be consumed in one sitting, now feature dual serving columns. One column displays information for eating a single serving and the other for the entire package. Vitamin D and potassium Vitamin C and A are no longer required on labels since deficiencies are rare, but Americans aren’t always getting enough vitamin D and potassium, which have been added. Knowing how much potassium is in food will be a great help when I’m looking to increase my intake to alleviate prednisone’s side effects. Vitamin D also is important to me and is something I monitor because hypercalcemia and hypercalciuria occur in a significant number of people with sarcoidosis, according to “Goldilocks, vitamin D and sarcoidosis,” published in Arthritis Research & Therapy in 2014. Getting too little vitamin D increases my risk for breast cancer and osteoporosis, which are also concerns. Added sugar Requiring manufacturers to list the amount of added sugars in products removes the guesswork for consumers. It could also “potentially prevent nearly 1 million cases of cardiovascular disease and type 2 diabetes over the next two decades,” the American Heart Association reported. American adults are devouring an average of 77 grams of sugar daily, according to the organization. That’s well over the 6 teaspoons (25 grams) per day recommended for women and 9 teaspoons (36 grams) per day for men. Consider this: Just one 12-ounce can of soda contains 8 teaspoons (32 grams) of added sugar. Also, just because juice is green doesn’t mean it’s healthy, Consumer Reports warns. For instance, Bolthouse Farms Daily Greens packs 32 grams of sugar, and Naked Juice Green Machine contains 53 grams in each of their bottles. The new label changes arm us with information to make better dietary decisions, but only if we take the time to look at them. *** 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. Dad jokes: A video of a dad pranking a golfer has gained millions of views. When a golf ball is hit into his backyard, the unidentified dad lies next to it and pretends to have been hit in the head, knocking him to the ground. When the golfer attempts to retrieve the ball, he’s in for quite a surprise. Bottoms up: Miller Lite celebrated International Beer Day on Aug. 7 by offering free beer to Americans who live in U.S. cities named after countries, Travel + Leisure reported. Japan, Pennsylvania; Scotland, Connecticut; Cuba, Illinois; and Mexico, New York are among the many examples. Drinkers in over 110 zip codes were able to claim rebates sent via Venmo or PayPal by purchasing beer on Friday and then uploading the receipt to a website. *** 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 New Nutrition Labels on Packaged Food Are Worth a Look appeared first on Sarcoidosis News. Link naar het originele artikel
  3. When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience. Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with rare diseases, hit upon the idea to take Disorder: The Rare Disease Film Festival all digital. The team launched The Disorder Channel on Roku and Amazon Fire TV this summer to bring rare disease films directly to people’s living rooms during a time when many are spending more time at home. Bo Bigelow started a podcast about caring for his daughter, Tess, who has a rare USP7 gene mutation. (Photo courtesy of Daniel DeFabio) Since its July 8 launch, DeFabio said the channel has reached 400 subscribers on Roku. It includes short documentaries, comedies, and fictional movies, all related to rare diseases. Bigelow’s podcast, “Stronger Every Day,” about raising his daughter with a rare disorder, will also be uploaded in episodic video form on the channel. The duo launched the two-day film festival in Boston in 2017, selling more than 1,200 tickets for seven screenings. The next event was in San Francisco in 2019. They had scheduled this year’s film festival for May 18 in New York, but had postponed the event until a to-be-announced date this fall. They didn’t want to do just another virtual event. With a video-on-demand channel, they could show as many films as they wanted. “Here, we can have an almost infinite library,” DeFabio told BioNews Services (publisher of this website) in a phone interview. “As long as we keep finding good films, we can keep adding good films.” For film festivals, organizers typically prefer that directors submit a shorter version of a film. But without time constraints or a schedule to stick to, DeFabio said the channel is able to show full-length versions and showcase multiple films for one disease. Anyone with the rights for a film about a rare disease can submit an application requesting it be featured on the channel. The rare disease community is vocal, especially when it comes to telling their stories, DeFabio said. Reaction has been positive, with people excited about a channel that relates to their own experience. “That’s certainly comforting and a pat on the back that makes us feel like we tapped into a need,” he said. A thumbnail from Daniel DeFabio’s documentary. (Photo courtesy of Daniel DeFabio) Bigelow and DeFabio, hailing respectively from Maine and New York, met at a Global Genes conference and shared the common experience of making a film about a child with a rare disease. Bigelow made a short film about finding other patients like his daughter Tess, 10; and DeFabio captured his experiences caring for his son Lucas, who had Menkes syndrome. A conversation about the issue of where to put their rare disease documentaries spawned the idea of the Disorder film festival. “Why wasn’t there a more perfect match of a film festival for what we wanted to accomplish? Well, if there wasn’t one, maybe we should create one,” DeFabio said, recalling their initial conversations. Part of the value of the in-person film festival was bringing people face-to-face without having to attend an expensive conference, DeFabio said. Bringing people affected by different diseases, but with shared goals and needs, together. Each festival to date has been held in cities that are research hubs: Boston, San Francisco, and — possibly soon — New York. DeFabio would like to see the film festival move to Philadelphia, Chicago, and cities in Southern California and North Carolina. DeFabio tried to be a filmmaker in Hollywood after college but eventually fell into marketing for big and small films, mostly making TV commercials. He also had experience coordinating a small film festival in Boston. His son was diagnosed with Menkes syndrome as a 1 year old. Menkes syndrome is an ultra-rare condition characterized by the inability to metabolize copper. It is estimated to occur in 1 in 100,000 newborns, mainly boys. Life expectancy for those with the disease is between three and 10 years, unless they are diagnosed and treated promptly. Running a 5K to support his son didn’t feel right. He wasn’t a runner. He thought about how he could help his son with a disease that had no cure. It made sense to make a film about him. The aim of “Finding Help and Hope,” released in 2015, was to “remind people or show people that there are families living with children, and it’s a horrible diagnosis, but they’re still enjoying their child’s life,” DeFabio said. Lucas died two months ago at the age of 11, surpassing expectations. “He couldn’t walk or talk or sit without assistance, but he was a smiling laughing boy that brought a lot of joy to a lot of people,” DeFabio said. Bo Bigelow and his daughter, Tess. (Photo courtesy of Bo Bigelow) Bigelow, a lawyer, is chairman and co-founder of the Foundation for USP7 Related Diseases, which was the name given to the disorder affecting Tess, who has a rare USP7 gene mutation that inhibits protein recycling. As of 2018, there were a reported 25 individuals with a mutation in this gene, and the disease is now known as Hao-Fountain syndrome. While it is primarily focused on the rare disease community, DeFabio thinks it’s possible for The Disorder Channel to expand, especially among people stuck at home watching streaming. What rare disease families go through, he said, mirrors what everyone is going through in the pandemic. “None of our films are about COVID-19, but they’re about hearing there’s a deadly disease that’s going to impact you and how do you fight that,” DeFabio said. The Disorder Channel is sponsored by the pharmaceutical companies Takeda and Ovid Therapeutics. The post New Streaming Channel Showcases Rare Disease Films appeared first on Sarcoidosis News. Link naar het originele artikel
  4. Laatste week
  5. Although macrophages (cells involved in the detection and destruction of bacteria and other harmful organisms as well as dead cells) are classified as immune cells functioning in the activation and resolution of tissue inflammation, it is now clear that they are critically involved in a variety of disease processes, such as chronic inflammatory diseases, tumor growth and metastasis and tissue fibrosis. Link naar het originele artikel
  6. dgotje

    Voorstellen dgotje

    Beste Joachim, het gaat wel goed... Ik denk dat mijn sarco onder controle is.. Echter ik zit nog steeds aan de prednison, dus hoop snel te kunnen afbouwen. Ergens eind augustus nieuwe ct scan, dus duimen...
  7. Yolande YS Versteege

    Voorstellen Yolande ZVT

    Hi Joachim, ik eet minder suiker en probeer niet al teveel alcohol te nemen. Alcohol verzuurt natuurlijk en dat heeft een negatief effect. Heb nu al een paar keer meegedaan met IkPas en Veertigdagentijd en daardoor heb ik zeker minder last van mijn spieren. Hoe gezonder je leeft, hoe beter het toch wel gaat. Het credo blijft: Luister naar je lichaam!
  8. Barbara38

    Voorstellen Barbara

    Ben nog steeds zoekende maar gaat al beter..
  9. Barbara38

    Voorstellen Barbara

    Dank je
  10. Joachim

    Voorstellen Yolande ZVT

    Goedenavond Yolande, Welkom op het forum en bedankt voor het delen van de links. Deze zijn bij de meeste wel bekend maar je kunt ze niet vaak genoeg blijven herhalen 🙂 Fijn dat je aan zee woont en dus genoeg van gezonde lucht kunt genieten en mooie wandelingen kunt maken. Heb je ook iets met voeding gedaan ivm ontstekingen? Grt, Joachim
  11. Joachim

    Voorstellen dgotje

    Hallo Dave, bij de meeste mensen heeft MTX wel wat bijwerkingen maar hoe heftig die zijn, verschilt weer per persoon. Hoe gaat het nu met je?
  12. Joachim

    Voorstellen Barbara

    Welkom Barbara op het forum. Erkenning van de Sarco is wel even een stap om te zetten. Goed van je dat je jezelf er nu mee confronteert. Het proces van erkenning kan dan beginnen en de een doet daar langer over dan de ander. Heb je inmiddels wel je balans kunnen vinden? Grt, Joachim
  13. Joachim

    Voorstellen Mariel

    Goedenavond Mariel en welkom, hoe gaat het met je inmiddels?
  14. Joachim

    Voorstellen Theo

    Goedenavond Theo, Hoe waren de onderzoeken gegaan en heb je al resultaten?
  15. Joachim

    Voorstellen Adrien

    Hallo Adrien, hoe gaat het met je en heb je inmiddels de resultaten mbt Reuma?
  16. Joachim

    Don’t Allow Sarcoidosis to Deter Your Dreams

    This weekend I’ll be celebrating an anniversary. Actually, it’s more like a milestone. Although it seems peculiar to celebrate it, I’m doing so with plans to become a better person. This weekend marks the third anniversary of my first spontaneous pneumothorax thanks to pulmonary sarcoidosis. Each year I acknowledge the day and the circumstances, but this year I plan to celebrate how it has changed my life. Since this happened in 2017, I’ve been hospitalized about five times, each a result of the event. It hit like a ton of bricks The morning I experienced the spontaneous pneumothorax, I couldn’t breathe upon waking. At first, I tried to remain calm as I got out of bed, but immediately I started gasping for air. My wife saw that I was in distress and called our son to help me get up. He helped me downstairs to my oxygen concentrator. I turned it on and increased the level. I wasn’t getting any air. At that point, I started to panic. I instructed him to call 911 and calmed myself down by taking short, deliberate breaths. The emergency techs arrived and immediately hooked me up to their oxygen. To my surprise, it helped a little. On the way to the hospital, they kept monitoring my blood pressure, asking me questions, and feeding me more oxygen. I arrived at the hospital’s emergency room, where they hooked me up to oxygen, gave me an IV, took X-rays and a CAT scan, and told me that my left lung had collapsed. I thought to myself, “What the (expletive) just happened to me!?” Within a few minutes, they gave me a shot of fentanyl and my first chest tube. Once they placed the tube, I thought, “Ahh, I can breathe again … hallelujah!” Surprisingly, all I could think about in that moment was my brother, a chemist, and his company, which processes fentanyl. I started laughing to myself because he had told me about all of the protocols and safeties in place for this medication. I couldn’t wait to tell him! And here we are … I was in the hospital nearest my house for a week before I was transferred to the hospital with all of my pulmonology records. I was beyond relieved to be at my hospital’s lung center. It was a little farther from my house, but not by much. I felt at ease because they knew about my lung conditions and sarcoidosis. My only complaint was the food, but my family brought me treats each time they visited. During my two-month stay, I grew close with a respiratory therapist and a nurse. Luckily, one of the overnight respiratory nurses was a family member, so she would visit me in the mornings to make sure I was OK. She also knew several nurses on my floor. I felt relieved that folks were taking good care of me and looking out for me. I had several good conversations with one particular nurse. She told me that nursing had been on her list of goals, but life got in the way so she ended up working for the transit system. After getting laid off from that job, she was in such a disarray she didn’t know which way to go. Her husband encouraged her to focus on nursing and pursue her dream. She said she initially felt guilty and selfish fulfilling her dream and leaving her family with one income. Her husband stood his ground. She went to school and became a nurse a few years later. I’m embarrassed for not keeping the promises I made to myself to pursue the things I want and love to do. Every day I give thanks for a new day and tell myself, “Today’s the day I start … ” Then life gets in the way. I often think about this nurse and how she buckled down, stayed focused, and did the necessary work to fulfill her dream. We can all do the same thing by doing the uncomfortable work first. She taught me that when life gets in the way, change lanes and move ahead. Time to upset the apple cart! *** 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 Don’t Allow Sarcoidosis to Deter Your Dreams appeared first on Sarcoidosis News. Link naar het originele artikel
  17. New diagnostic guidelines for cardiac sarcoidosis yield a higher number of diagnoses and identify more cases of isolated cardiac sarcoidosis (iCS), according to a study in Japan. In cardiac sarcoidosis, inflammatory clusters of white blood cells — called granulomas — affect the heart but can also affect other organs. In contrast, the heart is the only affected organ in cases of iCS. The study, “Diagnosis of isolated cardiac sarcoidosis based on new guidelines,” was published in the journal ESC Heart Failure. The Japanese Circulation Society (JCS) recently updated its guidelines for diagnosing iCS. One of the updates sets as a major diagnostic criteria the presence of abnormally high accumulation of the diagnostic tracer 18F‐fluorodeoxyglucose (FDG) in the heart. FDG is used in positron emission tomography/computed tomography (FDG‐PET/CT). Another new criterion is late‐gadolinium enhancement of the myocardium (heart muscle) in gadolinium‐enhanced MRI scans. These tracers allow physicians to better visualize the tissue damage that sarcoidosis can incur. The issuance of these new guidelines prompted researchers in Japan to evaluate past records using the two sets of diagnostic criteria — the previous conventional criteria and the new ones — to see how the new guidelines might affect diagnosis. The study analyzed 94 records of suspected cardiac sarcoidosis patients (mean age of 61 years) who underwent whole-body or cardiac FDG-PET/CT scanning between January 2013 and August 2019. None of the patients had taken corticosteroids before the study. Among the cohort analyzed, 22 patients were diagnosed with cardiac sarcoidosis based on conventional international criteria. When the new JCS guidelines were applied to this cohort, this number rose to 34 — 27 with systemic sarcoidosis and seven with definitive iCS. Of the remaining 60 patients not diagnosed with cardiac sarcoidosis under the new guidelines, four were judged to have suspected iCS, 13 had systemic sarcoidosis without cardiac involvement, and the remaining 43 were deemed to have no sarcoidosis. Of the 72 patients not diagnosed with cardiac sarcoidosis under the conventional guidelines, 16 met the new criteria for diagnosis of the disease. In contrast, four of the 22 who met the conventional criteria did not meet the new JCS criteria for a positive diagnosis of cardiac sarcoidosis. The team also assessed corticosteroid administration, as these treatments are often used to help manage sarcoidosis symptoms. Twenty-six of the 34 cases identified by the new guidelines, and six of the 60 identified without cardiac sarcoidosis received corticosteroids. In comparison, 18 of 22 patients who met the conventional criteria for cardiac sarcoidosis and 14 of the 72 who did not met the criteria received corticosteroids, translating to a higher percentage of corticosteroid prescription. Although this study had some limitations, including its retrospective nature of a relatively small patient sample from a single center, the researchers suggested that the new JCS guidelines appear to result in higher cardiac sarcoidosis and iCS diagnoses compared to the conventional international criteria. “Diagnostic yield with the new JCS guidelines was higher, with approximately 1.5‐fold of the patients diagnosed with CS compared with the previous international criteria and definitive iCS accounting for approximately 20% of the whole CS cohort,” the researchers wrote. In some cases, the initial FDG-PET/CT scan was negative, although subsequent scans turned up positive. Because of this, the researchers argue that any patient suspected of having cardiac sarcoidosis should be carefully observed, even when the first scan is negative. The post New Guidelines for Cardiac Sarcoidosis in Japan Yield Higher Number of Diagnoses appeared first on Sarcoidosis News. Link naar het originele artikel
  18. Researchers from the Perelman School of Medicine at the University of Pennsylvania have now identified a protein called histone deacetylase 3 (HDAC3) as the orchestrator of the immune system's inflammation response to infection. By using both specially cultured cells and small animal models, HDAC3 was found to be directly involved in the production of agents that help kill off harmful pathogens as well as the restoration of homeostasis, the body's state of equilibrium. This work, published in Nature, shows that some of the methods being tested to fight cancer and harmful inflammation, such as sepsis, that target molecules like HDAC3 could actually have unintended and deadly consequences. Link naar het originele artikel
  19. Earlier
  20. I used to enjoy grocery shopping. The retail circulars that hit my mailbox on Fridays meant a crack at new deals. Since COVID-19 arrived, supermarkets have become my least favorite essential place to go. The weekly ads now serve as a risk vs. benefit analysis of which stores I want to brave in the midst of a pandemic and with sarcoidosis. There are still far too many unknowns about COVID-19 and the potential risk to our population. In May, the Foundation for Sarcoidosis Research released preliminary results from a survey indicating sarcoidosis and medications prescribed for it weren’t leading to worse outcomes from COVID-19 infection. So far, there have been no formal studies, and analyses are lacking, according to the article “Patients with interstitial lung disease and pulmonary sarcoidosis are at high risk for severe illness related to COVID-19,” published in the Cleveland Clinic Journal of Medicine in June. That’s why I’m continuing to play it safe. Supermarket aisles continue to be the riskiest place I have to go. People enter without temperature checks, unlike my care at medical facilities. They ignore social distancing, walking right up next to me to grab items off shelves. Far too many wear masks with their noses out. MarketWatch shared a study that suggests exhaling out your nose may release a higher concentration of the COVID-19 virus than exhaling out your mouth. In mid-March, my efforts to replace grocery aisles with safer options began. A lot of other people had the same idea, which is why it took me until May to land a reservation for contactless grocery pickup. When I unpacked the bags it was like being on Food Network’s “Chopped” and having to concoct meals from unplanned ingredients. Only 21 of the 36 items I chose were in stock, which was never indicated during the ordering process. There was no wait to order from Panera Bread, which began offering staples like produce, milk, and bread in April. Unfortunately, again I didn’t find out items weren’t available until I arrived for contactless pickup. Getting water was much easier, even during pandemic shortages, by going to a beer distributor that put it right in the trunk of my car. The meat and produce sections of supermarkets have been the most difficult to shop in during the pandemic. There are no aisles, and the areas are always crowded, especially when markets began experiencing meat shortages. In May, I decided the risk and aggravation were no longer worth it for meat and moved to a vegetarian diet. I then signed up for produce delivery from Misfits Market, which sources organic fruits and vegetables that farms and stores can’t sell. The produce I’ve received looks great, although some are smaller or larger than normal at times. (Photo by Athena Merritt) In recent weeks, I noticed food retailers are relaxing policies that made social distancing easier while shopping. Gone are the one-way aisles, as are the employees stationed at doors to count incoming customers to mark limit capacity. There are also no longer any restrictions on coming and going at stores, which used to designate one set of doors for entrance only and others for exit only. With safeguards disappearing and the pandemic still raging, I plan to give even less of my business to supermarkets in the future. Elmhurst ships plant-based, shelf-stable milks and creamers. In May, PepsiCo launched two direct-to-consumer sites: Snacks.com sells Frito-Lay snacks, and Pantryshop.com sells bundled products from Quaker, Gatorade, Muscle Milk, Tropicana, and others. Boxed offers everything from groceries to household products in bulk. As far as I’m concerned, until threat of COVID-19 is over, the less time I can spend in grocery stores the better. *** 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. Sky’s no limit: Lt. j.g. Madeline Swegle has become the first Black female fighter pilot in the Navy’s 110-year history, People magazine reported. Swegle received her Wings of Gold during a ceremony on July 31. Hooyah! That’s a cake?!: “Everything is cake” memes, which show off cakes decorated to look like ordinary items, are taking off in popularity, Delish reported. New Jersey cake artist Luke Vincentini has created more than 2,000, including cakes that looks like a sneaker, carton of eggs, a shampoo bottle, and a bag of Doritos. You can check out his jaw-dropping works on his Instagram page. *** 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 Leaving Supermarkets Behind to Reduce COVID-19 Risk appeared first on Sarcoidosis News. Link naar het originele artikel
  21. (HealthDay)—Thyroid dysfunction in patients with psoriasis may be associated with inflammation caused by psoriasis, according to a study published online June 22 in the Journal of Dermatology. Link naar het originele artikel
  22. Two years ago this week, I was in the hospital suffering from crepitus. I didn’t immediately know how serious the condition was, but it soon caused me to be intubated in the hospital’s ICU. The same hospital had released me about a week or two before that episode, so to say I was concerned is an understatement. I thought maybe the summer’s heat and humidity had caused me some respiratory distress — which they had — but when I started to develop pockets of air trapped under my skin, I was alarmed. By the time I was ready to go to the emergency room, my chest had ballooned, and I could feel the air traveling toward my shoulder and arm. When I arrived, the nursing staff got me situated and comfortable. I remember doctors commenting that my condition was “impressive.” Although doctors didn’t immediately know what was happening to me, I remained calm. My son, who had taken me to the hospital, was a little excited. My wife, who my son had picked up and brought to the hospital, was shaken. Then the air started traveling to my face. I was still calm, but I knew it was getting serious. Here we go again After several hours of CT scans, X-rays, and various consultations with other doctors, everyone agreed I had a small air leak in one of my damaged lungs. I thought, “Here we go again!” I envisioned weeks in the hospital, chest tubes, and the dreaded daily blood draws at 5 a.m. Because the air leak had started moving past my neck to my face, doctors decided to intubate me to protect my trachea. I was awake when they placed the tube, and I can say from firsthand experience that it’s really not a fun procedure. As it turned out, some of my fears were unfounded. I did have to get another chest tube and an endobronchial valve in my lung, but once they removed the tube from my throat, everyone thought I would return to my normal way of living. I was hospitalized only for a week. The day I was released, the doctor came in to remove the chest tube. I’ve become used to the procedure, but it’s still an awkward feeling to have it done. The doctor described the procedure, and after a short conversation and some breathing techniques, he removed the tube, stitched me up, and I was on my way. I can still remember how it felt to have the tube removed. It was a job well done! A coincidental reunion My pulmonologist had referred me to a specialist in sarcoidosis and pulmonary hypertension. Pulmonary hypertension is an issue many folks with pulmonary sarcoidosis have, so routine cardiovascular tests are helpful to track the illness. When the time came for the appointment, I was taken aback by the doctor — it was the same doctor that had removed my last chest tube. While greeting each other, we instantly remembered our previous encounter. Good thing for me he’s a likable and pleasant person, much like my pulmonologist. We talked about my progress in the past year and some new therapies that might benefit my pulmonary hypertension. We decided on one he thought would be a good fit for my diagnosis, and then we initiated the plan. After trying the new therapy for a few months, I feel a lot better. He also suggested I have an echocardiogram to measure the pressure in my heart. After that procedure, I sent a message to my cardiologist so that she’d be on board with everything that’s been happening. I received a message from her explaining that the echo looked good. She said the pressure in my heart had decreased, which was good news. The pulmonologist I’d been working with for the new therapy called me with more results. Like my cardiologist, he said the pressure looked better than after my last echo in January. He suggested I continue to follow the plan, and within a few more months, my numbers should look even better. I was relieved after receiving this news from the two doctors, like I had permission to continue living to the best of my ability. Although I have some limitations, all good news is just that — good news! Never underestimate the power of self-determination and a good medical team. Both can work independently as needed and jointly when it counts. Now it’s time for me to get out and get into some trouble! *** 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 Self-determination Led to Progress As I Dealt With Sarcoidosis Setbacks appeared first on Sarcoidosis News. Link naar het originele artikel
  23. Yolande YS Versteege

    Voorstellen Yolande ZVT

    Er is een maandblad en daarvoor kan je naar https://sarcoidose.nl/ gaan. Hier staan tips en verhalen in. Echt de moeite waard. En toevallig vertelde een collega van mij dat ze sarcoidose had en het was fijn dat ik een medepatiënt (-lijder klinkt niet okay😉) had om mee te praten. Nu kan ik de gelezen bladen van https://sarcoidose.nl/ een goed adresje geven. En: gedeelde smart is halve smart.
  24. Yolande YS Versteege

    Voorstellen Yolande ZVT

    Hi, ik kom idd ook met toeval op deze site terecht. Door de coronacrisis nu ben ik toch wel wat ongeruster. Ik heb in 2009 ontdekt dat mijn schildklier niet goed werkte. Ik had enorme last van vermoeidheid en spierpijn na extreme sport etc. En toen kwam dit eruit om te beginnen. Maar het gedoe met de spieren ging niet over, dus toen naar de reumatoloog. Een scan gekregen met radioactieve vloeistof en er was niet echt iets te vinden, dus dan was het fybromyalgie. En er was eventueel een cursus 'Omgaan met de pijn'. Ik liep huilend het ziekenhuis uit. Uiteindelijk heeft een arts mij steeds telefonisch 'bestraald' en NAC Bonusan voorgeschreven. Het ging wel even over, maar was een lange weg. In de tussentijd dacht ik dat ik longontsteking had (voorjaar 2011), maar de pijn ging niet over ondanks anti-biotica. Dus toen longfoto's en daar kwam de aap uit de mouw. Sarcoidose. Uitzieken en verder niets. Het is over in de longen, ben nog wel wat kortademig, maar heb levensstijl aangepast en meer gesport, conditie is beter. Af en toe heb ik dat littekens opzwellen. Pijn in handen na aardappelschillen, pijn als ik andere hakken aanheb, etc. etc. Als ik terug redeneer, ongeveer een dag, dan begrijp ik dat ik iets anders heb bewogen/gedaan als normaal. Het is dus een uitgestelde reactie steeds. Maar al met al mag ik niet mopperen. Ik houd wel mijn hart vast in deze tijd en houd afstand en voel me zeer ongemakkelijk als mensen vlak langs mij lopen of als familie vol in je aura komt. Maar so far so good. Het is inmiddels augustus en gelukkig woon ik aan zee. Dus wandelingen zijn gezond en ik blijf weg uit de drukte in de diverse steden.
  25. Protalix BioTherapeutics and SarcoMed USA have entered into a non-binding agreement related to the development and commercialization of PRX-110 (alidornase alfa) for pulmonary sarcoidosis and related diseases, according to a Protalix press release. PRX-110 is currently being developed by Protalix as a potential therapy for cystic fibrosis and other conditions, including sarcoidosis. The therapy received orphan drug designation from the U.S. Food and Drug Administration this month for the treatment of sarcoidosis. This designation is given to medications that are intended to treat or prevent rare diseases or conditions, defined as those that affect fewer than 200,000 people in the United States. The investigational therapy contains a recombinant form (lab-made) of the human deoxyribonuclease I (DNase I) made using plant cells — Protalix’s proprietary plant-cell based ProCellEx platform. DNase I is an enzyme that is able to cut certain kinds of DNA molecules. In sarcoidosis patients, DNA from microbes, such as bacteria, is often identified in affected tissues, suggesting that microbial DNA plays a role in the disease. More specifically, microbial DNA is known to trigger an immune response, as its presence is typically indicative of an infection. Sarcoidosis is characterized by increased immune system activity, leading to the formation of small clumps of inflammatory cells called granulomas in different tissues. Of note, in pulmonary sarcoidosis, the affected tissue is the lung. Based on the fact that microbial DNA drives inflammation and that it is commonly found in sarcoidosis tissue, researchers hypothesized that microbial DNA could be a driver of the chronic inflammation that characterizes sarcoidosis. DNase I is able to cut up microbial DNA, effectively removing it from the tissue milieu. By removing these DNA molecules, PRX-110 may eliminate a primary signal that drives inflammation, thus ultimately reducing inflammation and granuloma formation, and easing disease symptoms. PRX-110 is also being investigated as a potential treatment for cystic fibrosis because, apart from its antimicrobial activity, it may help to loosen up the thick mucus that characterizes the disease. Preclinical data, as well as data from early clinical trials, have so far been supportive of the efficacy of PRX-110 in cystic fibrosis. SarcoMed USA is also developing another DNase 1 compound, called SM001, as a potential treatment for chronic pulmonary inflammation in patients with pulmonary sarcoidosis. The post Protalix, SarcoMed USA Enter Non-binding Deal for Potential Sarcoidosis Treatment appeared first on Sarcoidosis News. Link naar het originele artikel
  26. When I was fired years ago while battling sarcoidosis on unpaid sick leave, I was blindsided. The termination letter reached me at the end of the month, at the same time that my health benefits were stopped. I ended up in a similar situation as the estimated 5.4 million workers laid off between February and May of this year: uninsured. Pandemic-fueled layoffs have led to a record number of Americans losing health insurance coverage, according to a new report by The National Center for Coverage Innovation at Families USA. With families already struggling, coverage loss could mean choosing between basic necessities and paying for essential medical care, the report warned. That was the same daunting scenario I had faced. Last year, roughly 153 million people were covered by employer-sponsored health plans in the U.S., with an average annual premium of $7,188 for individual and $20,576 for family coverage, according to the 2019 Kaiser Family Foundation Employer Health Benefits Survey. Staggering premiums prevent many from being able to assume the full cost necessary to continue coverage through COBRA when they lose their job, like me. The Affordable Care Act’s existence provides an option for coverage, if you can find a plan within your budget at healthcare.gov. Depending on your income and your state’s availability, Medicaid may be a landing spot for care, but be forewarned that many physicians may not accept it. Preexisting conditions may serve as a barrier to securing private marketplace insurance. Getting healthcare on a tight budget If you can’t afford insurance or coverage under a health plan your physician accepts, there are options. Talk to your medical team. My physicians helped in numerous ways, including allowing me to pay out-of-pocket for services not covered, discounting treatments, offering payment plans, and being mindful of the cost of diagnostic tests and prescriptions. You may be eligible for financial assistance or be able to set up payment arrangements for services at hospitals and other medical facilities. Just ask. There are numerous ways to save on prescription medications as well, including programs offered by pharmaceutical companies and pharmacy chains, which I wrote about last year. Be sure to check with your local rescue squad to see if they offer a subscription. My mother paid a flat fee that covered the household for the year, which saved me nearly $1,200 when I had to be taken by ambulance to the hospital in 2013. Additionally, the National Association of Free and Charitable Clinics provides a search tool to find free and charitable clinics and pharmacies in the U.S. Whatever you do, don’t neglect your health. *** 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. ‘Finding Rover’: The Brandywine Valley SPCA in New Castle, Delaware, has started using new facial recognition technology called “Finding Rover” to help connect lost pets with their owners, CBS reported. Images of dogs, cats, rabbits, guinea pigs, and reptiles can be uploaded when they go missing, or even before if owners want to be proactive, CBS said. Not just for popping: A Toronto native has found a creative use for bubble wrap: art. Bradley Hart creates photorealistic images by loading syringes with paint and injecting each cell of the bubble wrap, according to a report on DailyMail.com. It takes Hart a month and 2,000 syringes to produce each piece of artwork. *** 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 Bouncing Back from Unexpectedly Losing Health Insurance appeared first on Sarcoidosis News. Link naar het originele artikel
  27. Joachim

    Thankfully, I Am Not Alone on This Journey

    This week, my wife and I will be celebrating our 22nd wedding anniversary. As only a wife can document such an occasion, we’ve been together for 35 years total. Our son asked me how it feels. I told him I’ll let him know when the governor commutes my sentence, but until that happens, it feels like a lifetime. When I look back and think about it, it has been an enjoyable lifetime of fun and laughter. We went to high school together and didn’t care for each other until our senior year. It all started when I accidentally stepped on her shoe and it came off her foot. That was the beginning of her disliking me, but something warmed up during our senior year, when we became more cordial toward each other. We became so cool that she almost got me suspended for leaving school grounds while walking her to the store. Good thing the vice principal and my mother had a sense of humor and agreed I was a knucklehead for following her — look where it got me! We lost touch after high school and ran into each other at a nightclub, where we danced all evening and got caught up on what we were doing after high school. We exchanged phone numbers and kept in touch as friends. We’d occasionally meet for lunch and would hang out some Friday nights and just enjoy each other’s company. To be honest, I don’t remember when we became a couple — we just did. I didn’t see that coming Fast-forward a few years after college, and we both had started working in our careers. I worked in Washington, D.C., and she remained in Philadelphia. When I returned to Philly, we welcomed our son, and the next thing I remember, we were buying a house. A year after that, we got married. Talk about an adventure! I believe it was 2003 when I was diagnosed with sarcoidosis by accident, while meeting with a doctor about sleep apnea. Apparently, one has something to do with the other. The conversation started when he saw some scars on my legs. He said that more than likely they came from sarcoidosis, so I agreed to do a bronchoscopy of my lungs. The test and CT scans confirmed the doctor’s theory. After finding out, I shared the news with my wife, and neither of us paused to think about how this could affect us in the future. For the better part of 10 years, we were enjoying our lives with our family and the addition of my daughter. I didn’t yet have serious problems with sarcoidosis. I often would forget I had it except when I was scheduled for pulmonary function tests. Always an adventure The summers of 2017 and 2018 changed my life. During those years, I suffered multiple spontaneous pneumothoraces and was hospitalized several times. I often think about the events of those summers and sometimes I become overwhelmed. Not because of my physical condition, but by how much my wife means to me. In light of my physical limitations compared with how I used to be, she still stands tall with me. Sometimes I grow frustrated with myself because of my limitations, but she keeps everything under control like I used to. I guess watching me over the years has taught her a lot. Sometimes when I’m feeling down on myself, she’ll make fun of me and my self-induced pity party. She’ll crack a few jokes at my expense, which will get both of us laughing up a storm, and the adventure will continue. I’ve amassed a lot of friends over the years, but when you have someone willing to stand with you when you feel you can’t stand alone, you have something money can’t buy. Chronic health conditions can cause you to lose your job, friends, and money, but if you have one person who’s willing to stand with you, none of the other stuff matters. I guess the saving grace for my wife and me is that we were friends before we became a couple. Our humor, our adventures, the laughter with family, and our memories keep us going. I wish everyone could have the gift of someone special like I do. You’ll start your day thankful and end it with a smile. *** 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 Thankfully, I Am Not Alone on This Journey appeared first on Sarcoidosis News. Link naar het originele artikel
  28. More than 20% of sarcoidosis patients show signs of an immune system response against aluminum, beryllium, zirconium, and silica, supporting the idea that these compounds may be involved in the development of the disease in a subgroup of patients, according to findings from a research study. The study, “Immunoreactivity to metal and silica associates with sarcoidosis in Dutch patients,” was published in the journal Respiratory Research. Sarcoidosis is a condition in which the immune system is overactive, leading to inflammatory cells bundling together and forming structures called granulomas that can harden over time and cause permanent damage to tissues and organs. Previous studies have provided evidence that certain metals as well as silica can elicit a response from the immune system in sarcoidosis patients, contributing to the development of the condition. Researchers in the Netherlands and Belgium therefore collaborated on a study to more closely examine the relationship between sarcoidosis and these compounds. “The combination of occupational exposure and an immunological reaction has not been studied before in a group of sarcoidosis patients and non-sarcoidosis controls,” the researchers wrote. The study analyzed a group of sarcoidosis patients who had previously visited the Interstitial Lung Disease Center of Excellence at the St. Antonius Hospital in Nieuwegein, the Netherlands. For comparison, a control group comprised of patients at the same hospital who had been diagnosed with obstructive sleep apnea (OSA) were included. OSA was chosen as its development is not caused by environmental triggers. To assess potential exposure to metals and silica, all patients were sent a questionnaire about their complete job history. Each job description was matched with a description in the International Standard Classification of Occupations 1968, which categorizes jobs into seven major groups with subdivisions for any unique job title. A total of 256 sarcoidosis patients and 74 OSA patients responded to the questionnaire and were included in the study. Risk of exposure to silica or other metals was assigned through the DOM-JEM, a matrix designed in the Netherlands for population studies to associate job titles with exposure risks. Results showed that 83 sarcoidosis patients (32.4%, 83 out 256 patients) had occupational exposure to silica or metals, compared to 18 control participants (24.7%). Of the exposed patients, 33 with sarcoidosis and 19 from the control group were invited to perform what is called a lymphocyte proliferation test (LPT) — a test to determine whether a person exhibits an immune response to a specific compound. In LPT, a blood sample is drawn from the subject, and lymphocytes — white blood cells, important agents of the immune system — are collected. Lymphocytes are then incubated for five days in a medium that also contains the compound of interest, and their growth rate is analyzed. In this case, the compounds analyzed were beryllium, aluminum, zirconium, and silica. In total, seven of the 33 sarcoidosis patients (21.2%) showed a specific reaction to the tested metals or silica, compared to none in the control group. One sarcoidosis patient reacted to aluminum, three to beryllium, two to zirconium, and two to silica. One of these patients showed an immune response to both zirconium and beryllium. However, the researchers found that occupational exposure did not predict the possibility of reacting to metals or silica, nor did the severity of sarcoidosis in the patients. “Almost half of our patients with a positive LPT were classified by JEMs as unexposed,” the researchers wrote. “Since job history with assigned exposure did not differ between sarcoidosis patients and controls, our data indicate that even very low incidence or occasional exposures could be relevant in sarcoidosis patients.” Overall, based on the results, metals and silica can cause an immune reaction in certain sarcoidosis patients, and that this may contribute to the development of the disease in some cases, the team said. “Immunoreactivity to silica and metals found in sarcoidosis patients only, supports the hypothesis that these antigens may be involved in the disease pathogenesis of a distinct subgroup of sarcoidosis patients,” the researchers wrote. Further studies are however needed to “clarify underlying immunological pathways and mechanisms in order to establish a more definitive role for these antigens in sarcoidosis,” the team added. The post Certain Metals, Silica Can Cause Immune Response in Sarcoidosis, Study Finds appeared first on Sarcoidosis News. Link naar het originele artikel
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