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  2. Don't fry: 3 stages of heat stroke you need to know. With temperatures soaring this month, don't ignore these warning signs of heat stroke. NBC Health News, 07/19/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Hi Quiltfairy, You've certainly had more than your fair share of problems with scleroderma and I think that you're incredibly brave. You have a positive attitude which is extremely refreshing and makes me feel very humble when I hear how you overcome all the difficulties you face. Thank you for sharing your story with our members and hopefully they will be able to exhibit the same sort of courage, which you are showing. My best wishes to you,
  4. Hi, everyone that has just joined the Forums. To tell a few of you what I have gone through with my disease. It started in Canada after unloading a load of rails and throwing straps over the hay to secure the load. I was in the right place at the wrong time and I fractured my skull, broke my nose and neck. The doctors think that might have caused the beginning of the scleroderma and there are a lot of theories that cause scleroderma. The first test was on my legs, when that was done the doctors took 6 tubes of blood. The labs here got a partial and the blood was then sent to the Mayo Clinic. My doctor called me to come to the clinic and she told me I had scleroderma. At that point she set me up with a rheumatologist and when I walked into his office he said I definitely had scleroderma. I have given up most of my driving in town only. I have to see my rheumatologist on Wednesday; I hate going to see him as it's 2 hours there and 2 hours home. My son has moved in with me to help; he is doing a great job. My last thing I have to say is I think I am glowing in the dark and I wish someone would answer that awful ringing in my ears. May each of you be blessed.
  5. Hi Brenda, Welcome to Sclero Forums and thank you for contributing your experience so far with SCL-70 but no symptoms. As it happens, autoimmune thyroid disease is sometimes a sort of gateway to other systemic autoimmune conditions. See Exploring Systemic Autoimmunity in Thyroid Disease Subjects, 2018 Journal of Immunology Research. Also see Autoimmune Thyroid Disease on our main site. On the positive side, if you ever do develop other symptoms, it is likelier that they would take them seriously many years sooner than for others, and thus perhaps sort of nip things in the bud. Make sure your treatment of Hashimoto's is optimal, and do everything in your power to keep stress under control, as it is also hard on the immune system. I'm sure in many ways it's a disadvantage to know about antibodies before any relevant symptoms appear, but the flip side of the coin is having abundant symptoms but no relevant antibodies. It's a catch-22 -- it's not ideal to be stuck on either side of the coin. But there are very few of us who managed to get classic symptoms right along with perfect antibodies, at precisely the right time...and who really wants that, either? It's all objectionable, when it comes right down to it. It's like, what do you want? Worry but with nothing to show for it? Confirmed worries? Or continued worries with symptoms but no antibodies? "None of the above" is the correct answer. And you could argue that it is harder in some respects to have a potential cause for concern but nothing to show for it, which could be crazy-making if you let it. So keep on keeping your head on your shoulders. You'll find both comfort and concern from stories of people who have antibodies and so far nothing, or had antibodies and then got sick later.
  6. Last week
  7. Heart failure (HF) risk in systemic lupus erythematosus (SLE) compared to diabetes mellitus (DM) and general medicaid patients. Further investigation into the biologic mechanism of HF among SLE compared to non-SLE and DM patients may shed light on the findings of this study. PubMed, Semin Arthritis rheumatologist, 06/11/2019. (Also see Symptoms and Complications of Lupus and Symptoms and Complications of Diabetes) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. Anti-cancer Therapy May Help Fight Inflammation in Scleroderma (SSc) Patients, Data Suggest. These results suggest that tagraxofusp might be a potential therapeutic approach for SSc or other autoimmune diseases. Scleroderma News, 06/26/2019. (Also see Cancer and Dendritic Cells) 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 Genentech for their sponsorship support. Posted 08/21/2019.
  10. Hi Jeannie, I'm always thrilled to hear from you! I'm delighted that you are enjoying an abundance of grandchildren and dogs. I'm sorry things are still progressing but also glad you have them treated as good as possible, and still active and making the best of things.
  11. For healthy blood pressure, both numbers matter. The study analyzed more than 36 million blood pressure readings from more than 1 million adults. NBC Health News, 07/19/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. Effect of disease-modifying anti-rheumatic drugs (DMARDs) on bone structure and strength in psoriatic arthritis (PsA) patients. Despite longer disease duration, bDMARD-treated PsA patients benefit from higher bone mass and better bone strength than PsA patients receiving methotrexate or no DMARDs. PubMed, Arthritis Res Ther, 2019 Jul 3;21(1):162. (Also see Psoriasis and Psoriatic Arthritis and Disease-Modifying Anti_Rheumatic Drugs) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Colonic and Anorectal Manifestations of Systemic Sclerosis. Colonic and anorectal manifestations of systemic sclerosis include constipation, diarrhea, and fecal incontinence, and can diminish quality of life for these patients. PubMed, Curr Gastroenterol Rep, 2019 Jul 8;21(7):33. (Also see Bowel Dysfunction) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. Earlier
  15. Health Facts Aren’t Enough. Should Persuasion Become a Priority? Those with the least understanding of science oppose it the most and also think they know the most, a study showed. New York Times, 07/23/2019. 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 08/16/2019.
  17. Anti-D4GDI antibodies activate platelets in vitro: a possible link with thrombocytopenia in primary antiphospholipid syndrome. We show here that antibodies anti-D4GDI are present in the sera of PAPS patients and can prime platelet activation, explaining, the pro-thrombotic state and the thrombocytopenia of PAPS patients. PubMed, Arthritis Res Ther, 2019 Jul 1;21(1):161. (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.
  18. GI Manifestations With a Focus on the Esophagus: Recent Progress in Understanding Pathogenesis. The improvement of diagnostic tools for esophageal symptoms and dysfunction offer an opportunity to improve the characterization of scleroderma esophageal disease. PubMed, Curr Rheumatol Rep, 2019 Jul 3;21(8):42. (Also see Esophageal Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  19. Hi Michelle, I get scared all the time. It comes, it goes. I think having a good bunch of folks who understand your fear really helps. I have the esophageal thing, intestinal, lung, and kidney involvement. But I've had symptoms gradually over the past 20 years. I do a lot of soothing things for myself, like coloring or painting, writing, reading, since I've got so much fatigue that working physically is pretty much out. It's hard to stay positive when you're scared, and yours may be a lot more limited than mine, I hope it is. You're brave to put your scared feelings out there, and I'll bet almost everyone on this forum has felt scared at some point so you are definitely not alone. I have found hypnosis particularly helpful, or guided imagery, especially we feel anxious. Go to your app store on your phone and type in hypnosis and a lot of free and low cost ones will come up. I'm glad you asked for help. This is sometimes really hard for me. Best, Nancy
  20. Can Learning a Foreign Language Prevent Dementia? Some researchers have suggested that learning a foreign language might help delay the onset of dementia. Time Healthland, 07/19/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  21. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 08/14/2019.
  22. Incidence and patterns of malignancies in a multi-ethnic cohort of rheumatoid arthritis (RA) patients. There is a trend toward an overall increased malignancy risk in our RA patients compared to the general population. PubMed, Int J rheumatologist Dis, 07/11/2019. (Also see Symptoms and Complications of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. Thanks Jeannie; I've made a note to amend this on the website. Best wishes,
  24. Hi Jeannie How lovely to hear from you and I'm so pleased to hear that you're very much alive and kicking!! I'm hoping that all your family and dogs are well; I'm still alive (after ten years diagnosed) as you can see and continuing much the same, without too many nasty scleroderma surprises! Best wishes to you and the family,
  25. Hi All, Here I am again, back to affirm there can be a good life with scleroderma. It will be 13 years on October 26th since I was diagnosed. At that time I had mild pulmonary hypertension, mild interstitial lung disease, no skin thickening, and horrific GERD. Um, I had 2 dogs and no grandchildren, and was an active hiker at high altitudes. Things have progressed some. I now have 4 grandkids and 3 dogs! The #3 dog wasn't really intended but once you get on the herding dog rescuer list, things happen... As for the scleroderma, the PH/PAH is now moderately severe and the same can be said for the ILD. GI-wise, my esophagus is 'dead', there's no motility at all. I am starting to have swallowing issues and some bowel issues. However, thanks to some really great doctors and a few new medications, I am still doing pretty much what I want, albeit with supplemental O2 . I no longer hike above 8400' /2600m, because I just can't carry enough O2 to do longer/higher hikes. I’m a lot more careful with my diet and the mechanics of eating. We still travel and I have been doing some flying as P2 with a friend. I guess the biggest impediment to doing everything and anything I want is my age, having hit 72 this year. Dealing with age-appropriateness is such a pain. :-) I hope everyone is well and happy, Fondly, Jeannie
  26. Hi Janet, If you did a topic search on Systemic Scleroderma sine Scleroderma, you may have seen some of my posts (I'm also known as jeannie here). I was diagnosed with this form of scleroderma in 2006. I think what finally got me my diagnosis were the verifiable 'co-morbid' conditions: GI issues verified by a gastroenterologist, interstitial lung disease verified by a pulmonologist, and pulmonary hypertension verified by echo and then a right heart catheterization. I have no skin thickening whatsoever. I only have a positive ANA, never tested positive for SCL-70. I also got extremely lucky in that I live in the same city as National Jewish Hospital, which is the number one lung hospital in the USA and at that time had one of the most sclero-aware rheumatologists working there. I think my advice to you would be to get your depression under control first. I also have fibromyalgia and the medication I take for that helps with depression and anxiety as well as pain. You can't fight your own case when you feel hopeless. The next thing I would do is get a consult with a good GI. I’m not a doctor, but I could go on for hours about GERD and oesophageal strictures. It sounds like you might have a stricture and a report of oesophageal anomalies would be useful in getting a rheumatologist to think about 'sine'. I'd do the same with your other symptoms - try and see the relevant specialist. If you can add positive reports from other specialists, it goes a long way. It's a tough battle to get a diagnosis. I was willing to consider I was just a raving hypochondriac and needed psychiatric help by the time I got mine. Good luck, take care of your totally understandable depression, and keep fighting. And by the way, tell that less than helpful rheumatologist that rare does not equal never.
  27. Dr. Fischer has left his clinical practice at University Hospital of Colorado, effective this month, to take a position as Medical Director of a pharmaceutical company. I’m posting this just in case any of his patients got missed when the notification letters were sent.
  28. Hi Nelly, Welcome to these forums! I'm sorry to hear that you have worrying symptoms and blood tests. Regarding your blood test results, please see our sticky on the subject. The symptoms you describe could possibly relate to scleroderma, although they could equally apply to many other health problems and autoimmune diseases. We don't appear to have a listed scleroderma expert in Bulgaria and so I would recommend consulting the very best rheumatologist you can find, in order that you can receive satisfactory advice and treatment. We do have extensive medical pages, which I hope you'll find helpful and informative. Kind regards,
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