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Joelf

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About Joelf

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    West Sussex

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  1. In Loving Memory of Lorraine Wempner, the International Scleroderma Network thanks Paul Wempner for his kind and generous donation to tackle scleroderma. Posted 11/13/2019. (Also see: ISN News) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Stroke recovery clue from patient walking speed. World-leading research is helping scientists find new ways of trying to help younger people who have had a stroke get back to work. BBC Health News, 10/28/2019. (Also see Cardiac (Heart) Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 11/14/2019.
  4. Hi Dorene, Welcome to these forums! I've included a link to our medical page on Raynaud's, which I hope you'll find helpful and informative. Your doctor is really the best person to advise you about the treatment and prevention of Raynaud's. Kind regards,
  5. Treatment Failures of Direct Oral Anticoagulants (DOACs). Our analysis illustrates that DOACs may fail in the setting of Food and Drug Administration and non-Food and Drug Administration- approved indications. PubMed, Am J Ther, 10/09/2019. (Also see Antiphospholipid Syndrome) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. Effect of Impairment-Oriented and Function-Oriented Exercises on Mouth Function in Subjects with Systemic Sclerosis. The results of this study suggest that rehabilitation appears to be useful in reducing tongue and lip impairments and in improving oral functions in subjects with scleroderma. PubMed, Folia Phoniatr Logop, 2019 Sep 24:1-13. (Also see Microstomia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. The International Scleroderma Network thanks Network for Good donors for their support! Posted 11/12/2019.
  8. Joelf

    Worried

    Hi Ronald, Like you, I've always found that my lungs tend to hurt a bit after a lung function test. Unfortunately, I can't really reassure you about the result of your PFT's, but I would suspect that getting very anxious about them is not going to help you. With a chronic illness such as scleroderma, it's normal to experience depression and anxiety along with illness and so it might be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding your health issues are difficult to deal with. Kind regards,
  9. Hi MissyQuack, Welcome to these forums! I'm sorry that you haven't been able to find a listed scleroderma expert , but we have found that some of our members do have to travel out of state to find one. Failing that, I would advise you to try and find the very best rheumatologist that you can. Kind regards,
  10. Even babies 'understand concept of counting'. Infants as young as 14 months can understand the concept of counting long before they learn the true meaning of "one, two, three", scientists say. BBC Health News, 10/26/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. Hi Missouri man, Thanks for updating us and I'm glad that some of your blood tests are not as bad as you feared. You may find that things will stabilise and please let us know how you get on. Kind regards,
  12. Celiac Disease (CD) and the Microbiome. This review is aimed at summarizing both pre-clinical and clinical evidence addressing the relationship between the intestinal microbiome and CD. PubMed, Nutrients, 2019 Oct 8;11(10). (Also see Celiac Disease) 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 11/09/2019.
  14. Individuals With Scleroderma May Have Increased Risk of Sleep-Disordered Breathing. In our cohort, approximately one-third of individuals with scleroderma had evidence of sleep-disordered breathing. PubMed, J Clin Sleep Med, 10/09/2019. (Also see Sleep Disorders) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. New drug brings hope to as many as 400,000 sufferers of agonising bladder pain syndrome. As many as 400,000 people in UK are thought to have bladder pain syndrome, also known as interstitial cystitis. Mail Online, 10/26/2019. (Also see Interstitial Cystitis) 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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