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Joelf

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Everything posted by Joelf

  1. Immune-mediated diseases (IMDs) and risk of Crohn's disease (CD) or ulcerative colitis (UC): a prospective cohort study. Individuals with one or more IMDs are at an increased risk for CD but not UC. PubMed, Aliment Pharmacol Ther, 12/07/2020. (Also see Inflammatory Bowel Disease) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Infection or autoimmunity? The clinical challenge of interstitial lung disease in systemic sclerosis during COVID 19 pandemic. The striking CT similarities between the 2 diseases make difficult to distinguish a worsening of SSc-ILD from COVID-19 superinfection. PubMed, J Rheumatol, 2020 Dec 1;jrheum.200832. (Also see Correlation between Pulmonary Fibrosis and other Diseases or Complications) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Should I Have Elective Surgery in the Pandemic? Patients must balance the chance of a life-threatening Covid-19 exposure against the opportunity for relief from a condition that may be painful but is not considered urgent. New York Times, 12/21/2020. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. The International Scleroderma Network thanks Jo Frowde for her monthly pledge support! Posted 01/24/2021.
  5. The Risk of COVID-19 Pandemic in Patients with Moderate to Severe Plaque Psoriasis Receiving Systemic Treatments. Several case reports described full recovery from COVID-19 with favorable outcomes in psoriasis patients who were being treated with synthetics or biologicals. PubMed, Vaccines (Basel), 2020 Dec 2;8(4):E728. (Also see Psoriasis and Psoriatic Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. Hi Viv, Welcome to these forums! I'm sorry to hear that your husband has scleroderma and is having problems with his voice. I've included a link to our medical page on Dysphonia (Hoarseness, Loss of Voice), which I hope you'll find helpful and informative. As Margaret has suggested, the correct medication may be of help to your husband (surgery may be a little bit drastic) and so we always advise that our members, if possible, consult a listed scleroderma expert, in order to receive the correct medication and treatment, as this complex disease requires speci
  7. Transcriptional insights into pathogenesis of cutaneous systemic sclerosis using pathway driven meta-analysis assisted by machine learning methods. Our analysis unveiled an important 80 pathway signatures that differentiated SSc patients into 8 unique subtypes. PubMed, PLoS One, 2020 Nov 30;15(11):e0242863. (Also see Causes of Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 01/21/2021.
  9. Pick Up the Knitting Needles for a Mood Booster. This inexpensive hobby abounds with benefits. And once you get good, you'll be a mitten machine. New York Times, 12/21/2020. (Also see Depression) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. Comparing the effects of vestibular rehabilitation with and without lavender oil scents as an olfactory stimulus on balance, fear of falling down and activities of daily living of people with multiple sclerosis: a randomized clinical trial. This treatment significantly alleviates the psychological effects of multiple sclerosis on daily life such as sleeping problems, feeling unwell, anxious, tense, depressed, etc. PubMed, Disabil Rehabil, 2020 Dec 11;1-7. (Also see Multiple Sclerosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates
  11. Increased expression of interferon regulated and antiviral response genes in CD31+/CD102+ lung microvascular endothelial cells from systemic sclerosis patients with end-stage interstitial lung disease. These observations suggest that interferon-induced and antiviral response proteins may participate in the pathogenesis of SSc vasculopathy and SSc-ILD. PubMed, Clin Exp Rheumatol, 11/17/2020. (Also see Pulmonary Fibrosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. The International Scleroderma Network thanks Lisa Payne for her kind donation in loving memory of Anthony M. Markley. (Also see Donate in Memory) Posted 01/18/2021. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Monoclonal antibodies divide overwhelmed Covid doctors. Some doctors are clamoring for the treatment, which, officials say, in some places is sitting unused. NBC Health News, 12/20/2020. (Also see Antibodies) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. Hi Margaret, To be honest, I'm not sure. I haven't been able to do the survey (although Shelley has completed it) as it's only for people in the US. It might be worth contacting them and asking them about Gareth (there is an email address for questions on their site.) It does say that it is for diagnosed scleroderma cases. Kind regards,
  15. Defining the course of tumefactive multiple sclerosis (TuMS): a large retrospective multicentre study. Large prospective studies could help to define the clinical characteristics and the best treatment algorithms for people with TuMS. PubMed, Eur J Neurol, 12/10/2020. (Also see Multiple Sclerosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 01/16/2021.
  17. Hi All, We've had news of an exciting study for Genetics and Systemic Sclerosis by 23andMe. In this study, 23andMe researchers aim to learn more about the genetics of people living with the disease in order to search for clues that could ultimately lead to the development of better treatments. You are eligible to participate in this study if you have been diagnosed with systemic sclerosis, are 18+ years old and are living in the USA. Just click on my link above in this post and it will give you all the information you need. Kind regards,
  18. Skin Histology in Systemic Sclerosis: a Relevant Clinical Biomarker. The possibility that skin histology may be useful as a predictive biomarker was suggested by a recent study that identified genes related to skin aSMA and CD34 staining intensity. PubMed, Curr Rheumatol Rep, 2020 Nov 26;23(1):3. (Also see Prognosis and Mortality) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  19. What Makes COVID-19 Different From the Flu? Compared to our typical seasonal flus, what makes SARS-CoV-2 dangerous is that it's a brand new virus. Time Healthland, 12/17/2020. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 01/14/2021.
  21. Performance of Different Criteria for Refractory Myasthenia Gravis (MG). There is high variability in the proportion of refractory MG patients depending on the criteria used, with ICG and REGAIN criteria capturing patients with worse disease severity. PubMed, Eur J Neurol, 12/11/2020. (Also see Myasthenia Gravis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  22. The International Scleroderma Network thanks Network for Good donors for their support! Posted 01/12/2021.
  23. Longitudinal analysis of T-cell receptor repertoires reveals persistence of antigen-driven CD4 + and CD8 + T-cell clusters in systemic sclerosis. Our results show that CD4+ and CD8+ T-cells are highly persistent in SSc patients over time, and this persistence is likely a result from antigenic selection. PubMed, J Autoimmun, 2020 Dec 8;117:102574. (Also see B Cells and T Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. New coronavirus variant: What do we know? Viruses mutate all the time and it's vital to keep a laser focus on whether the virus' behaviour is changing. BBC Health News, 12/21/2020. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  25. Would you like to help scientists find a cure for scleroderma? Dozens of clinical trials for scleroderma and pulmonary hypertension are actively recruiting now. Review them and be sure to ask your scleroderma expert about the ones you are interested in. (Also see Current Clinical Trials and Scleroderma Experts) Posted 01/09/2021.
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