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Found 3 results

  1. Children lose out on liver transplants, study finds. A system used to determine who is most in need of a transplant significantly underestimates the risk of death for younger children with liver disease, according to a new study. NBC Health News, 09/17/2018. (Also see Liver Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Hepatobiliary involvement (HBI) in systemic sclerosis (SSc) and the cutaneous subsets. Characteristics and survival of patients from the spanish rescle registry. Primary biliary cholangitis is the main cause of HBI and patients with SSc–HBI exhibited specific clinical and immunologic profile. Seminars in Arthritis and Rheumatism, 10/12/2017. (Also see 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. It's been a long, long time since I was last here - busy enjoying life and battling on despite the health problems. I seem to be making a habit of collecting rare conditions and that's what brings me back. I recently 'celebrated' my 7th scleroderma birthday (7 years since diagnosis of limited cutaneous systemic sclerosis) and I'm wondering how many of us 'sclerodermians' also have Primary Sclerosing Cholangitis (PSC). Who better to ask than the expert patients on the forums. After several years of poor liver function tests they reached a stage where action was needed and I was diagnosed in November 2015 with PSC. Since then I have done extensive research and educated myself as much as possible. My understanding is that the expectation for 'sclerodermians' with liver problems is usually Primary Biliary Cirrhosis (PBC), which is what the consultants thought was my problem, but there is now no doubt that my diagnosis is PSC. I have only managed to find one research paper covering limited cutaneous systemic sclerosis and PSC in the same patient and, apparently, that was the first case known (at least to the paper's authors) and that was in March 2015. I can't believe that I am only the second person known to have both diseases so thought I'd post this in the hope that there are more of us out there (not that I would wish it on anyone, of course). If so, I hope to be able to compare notes as neither my scleroderma Prof, nor my hepatobiliary consultant have ever come across both diseases in one patient and are unable to answer any of my questions. We are all on this magical mystery tour and learning together! So, if any of you have both limited cutaneous systemic sclerosis and primary sclerosing cholangitis, please let me know so that I can get an idea of numbers. I'm sure my consultants would be interested to know too. Thanks in advance.
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