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Joelf

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About Joelf

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  1. Hi Stacey, Welcome to these Forums! I'm very sorry to hear that you've been diagnosed with CREST and that it is affecting you so badly. However, I'm glad to hear that you are receiving the best treatment and have a good medical team, whom I'm hoping will be able to help you with suitable medication and it's possible your disease may stabilise in the future. Kind regards,
  2. Why it's important for patients to look at their doctor's note. Some patient advocates say a doctor's notes offer insights patients might never hear from their physician, putting patient and provider on the same page. Health News Today, 06/19/2019. (Also see Physician and Patient Relationships) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Hi Allie, Welcome to these forums! Without wishing to state the obvious, I would suggest that as much as possible, you should avoid taking cold showers. Perhaps the best idea if you can't avoid it would be to stay in the cold water for as little time as possible, as Raynaud's tends to be worse if your core gets cold (not necessarily your extremities.) I've included a link to our medical page on Raynaud's, which does include many tips for keeping warm and preventing an attack. Kind regards,
  4. Tapering biologic therapy for people with rheumatoid arthritis in remission: A review of patient perspectives and associated clinical evidence. More research is needed on tapering biologics, and should include studies of patient perspectives as well as health economic evaluations. PubMed, Musculoskeletal Care, 05/30/2019. (Also see Treatments for Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 07/14/2019.
  6. Low RUNX3 expression alters dendritic cell function in patients with systemic sclerosis (SSc) and contributes to enhanced fibrosis. We show at least two pathways potentially causing low runt-related transcription factor 3 level in SSc plasmacytoid dendritic cells. PubMed, Ann rheumatologist Dis, 05/24/2019. (Also see Dendritic Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. New Research Is Focusing on Treating Teens' Suicidal Thoughts With Support of Friends, Family. Past research has shown that people with more connections, stronger social networks, and more social support will be better off in terms of mental health. Time Healthland, 06/10/2019. (Also see Suicide Prevention) 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 Network for Good donors for their support! Posted 07/12/2019.
  9. Hi Janet, I'm sorry that your symptoms are worsening. Whilst I've no doubt the consultant you've selected is good at his job and specialises in gastrointestinal problems, we do recommend the scleroderma experts on our list. This is because scleroderma is such a complex disease and really does require a specialist in the disease. I'm in the UK and although I was treated very successfully by a top lung hospital (as I have lung involvement) I was still referred to The Royal Free Hospital as well, which contains top rank scleroderma experts, who are experienced in all the little idiosyncrasies which scleroderma can produce. We do have a scleroderma expert in Australia on our list, so perhaps it might be worth your while contacting them first, before travelling to the US. Kind regards,
  10. Hi Christina, I'm very sorry to hear that you're suffering so badly with vertigo and are experiencing such unpleasant symptoms. Thankfully, I haven't suffered with this condition myself, but I've included a link to our medical page on Brain (Cerebral) Involvement in Scleroderma, which does have a small amount on vertigo. I've also found a couple of threads on the subject - Vertigo and Vertigo and Nausea, which I hope you'll find helpful and informative. I would also suggest a visit to your scleroderma expert pretty quick, if you haven't done so already. Kind regards,
  11. The RIG-I pathway is involved in peripheral T cell lymphopenia in patients with dermatomyositis (DM). Our study showed for the first time that negative correlation between the increased RIG-I expression in peripheral T lymphocyte and T cell count in some patients with DM. PubMed, Arthritis Res Ther, 2019 May 29;21(1):131. (Also see Dermatomyositis and Polymyositis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. Common Causes of Pain in Systemic Sclerosis (SSc): Frequency, Severity, and Relationship to Disease Status, Depression, and Quality of Life. The majority of patients with SSc suffer from different types of pain which is associated with more severe disease, depression and poor quality of life. PubMed, Pain Manag Nurs, 05/15/2019. (Also see Pain Management) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. 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 07/09/2019.
  14. Most People Worldwide Trust That Vaccines Are Safe – But the Number Who Don't Is Concerning. The majority of people worldwide think vaccines are safe, according to a new global survey – but the share of doubters is still high enough to threaten immunity. Time Healthland, 06/19/2019. (Also see Vaccinations) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. Association between histopathologic changes and expression of selected microRNAs in skin of adult patients with IgA vasculitis. Further investigation of miRNAs expression in the affected tissues could improve knowledge of IgAV pathogenesis and possibly help to identify novel biomarkers in body fluids. PubMed, Histopathology, 05/28/2019. (Also see Vasculitis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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