Jump to content
Sclero Forums

Joelf

Administrators
  • Content Count

    5,541
  • Joined

  • Last visited

4 Followers

About Joelf

  • Rank
    Star Ruby Member

Profile Information

  • Location
    West Sussex

Recent Profile Visitors

7,543 profile views
  1. Isolation, Disruption and Confusion: Coping With Dementia During a Pandemic. The coronavirus has upended the lives of dementia patients and their caregivers and these changes have disrupted long-standing routines that millions of people with dementia rely on. Kaiser Health News, 08/18/2020. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Cryoglobulinemic Vasculitis (CV) in primary Sjögren's Syndrome pSS): Clinical presentation, association with lymphoma and comparison with Hepatitis C-related disease. Though infrequent, pSS-CV constitutes a distinct severe clinical phenotype of pSS. Seminars in Arthritis and Rheumatism, 07/27/2020. (Also see Symptoms and Complications of Sjögren's Syndrome and Liver and Spleen Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Rituximab (RTX) as a rescue treatment added on mycophenolate mofetil background therapy in progressive systemic sclerosis associated interstitial lung disease (SSc-ILD) unresponsive to conventional immunosuppression. Based on our results, RTX's use as an add-on treatment to MMF appears to be effective as a rescue therapy in patients with a more aggressive SSc-ILD phenotype. Seminars in Arthritis and Rheumatism, 08/08/2020. (Also see Cellcept and Biologic Agents) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. Bereaved Families Are “the Secondary Victims of COVID-19”. Many survivors will be shaken by the circumstances under which loved ones pass away and worrisome ripple effects may linger for years, researchers warn. Kaiser Health News, 08/12/2020. 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 Genentech for their sponsorship support. Posted 09/21/2020.
  6. Cervical Cancer Screening in Women with Systemic Lupus Erythematosus (SLE). Patients with SLE are at higher risk of abnormal cervical screening test results than controls, supporting the need for regular screening. PubMed, Arthritis Care Res (Hoboken), 08/16/2020. (Also see Cancer and Symptoms and Complications of Lupus) 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 Jack and Elizabeth Lewis for their monthly pledge support! Posted 09/16/2020.
  8. Association of functional (GA)n microsatellite polymorphism in the FLI1 gene with susceptibility to human systemic sclerosis (SSc). Extended repeat alleles of FLI1 (GA)n microsatellite may be associated with lower FLI1 mRNA levels and susceptibility to human SSc. PubMed, Rheumatology (Oxford), 2020 Jul 22;keaa306. (Also see Genetics) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 09/14/2020.
  10. Hi Casey, Welcome to these forums. I'm sorry to hear that you've recently been diagnosed with limited scleroderma and I can understand how worried and apprehensive you're feeling. We do have medical pages on Causes of Scleroderma: Drugs and Medications and Collagen Injections, Face Lifts, and Scleroderma, which you may find helpful and interesting. Collagen injections should be used with caution in people who have had certain connective tissue diseases including scleroderma and I would imagine that the same precautions would apply to taking collagen supplements. However, the best person to advise you about any sort of supplement is a listed scleroderma expert. We do recommend that if possible, our members do consult one, as such a complex disease as scleroderma does require specialist knowledge and expertise, in order to be dealt with correctly. I've also included a link to our medical page on Raynaud's to give you a little more light reading. Kind regards,
  11. Can Artificial Sweeteners Keep Us From Gaining Weight? Sugar substitutes may help stave off weight gain, but they have metabolic effects that some experts find concerning. New York Times, 08/20/2020. (Also see Food Guide) 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 Network for Good donors for their support! Posted 09/12/2020.
  13. Hi Mary, Sorry to hear that you're suffering with crepey skin; I've not heard of it being a particular feature of scleroderma, although skin problems are very common. I've included a link to our medical page on Skin Involvement, which I hope you'll find helpful and informative. Kind regards,
  14. Hi Mary, Welcome to these forums. I'm sorry to hear that you've been recently diagnosed with systemic scleroderma. I'm pleased that you're consulting the Mayo Clinic as the expert rheumatologists there are really the best people to give you specialist advice and help. I've included a link to our medical pages, to give you some more information. Kind regards,
  15. Hi Aimee, Welcome to these forums. I'm sorry to hear that you are suffering unpleasant symptoms due to morphea and I've included a link to our medical page on the subject, to give you more information. Since you've been dealing with this condition for a number of years, I assume that you have consulted a listed scleroderma/morphea expert. He would be the best person to give you specialist advice and help, as scleroderma morphea is a complex disease and requires knowledge and expertise in order to be dealt with correctly. Kind regards,
×
×
  • Create New...