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  2. 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.
  3. Last week
  4. 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.
  5. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 08/16/2019.
  6. 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.
  7. 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.
  8. 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
  9. 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.
  10. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 08/14/2019.
  11. 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.
  12. Thanks Jeannie; I've made a note to amend this on the website. Best wishes,
  13. 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,
  14. 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
  15. 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.
  16. 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.
  17. 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,
  18. Cancers in systemic sclerosis (Ssc) : risk factors, impact on survival and literature review. The history of renal scleroderma crisis and the positivity of anti-topoisomerase I antibodies were associated with an increased risk of cancer in SSc patients in this monocentric study. PubMed, Rev Med Interne, 06/26/2019. (Also see Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  19. The International Scleroderma Network thanks Network for Good donors for their support! Posted 08/12/2019.
  20. Hi everyone, I found this nice community while looking for information about scleroderma. I live in Bulgaria, Europe. I would like to share my story and hopefully get some opinions on what is going on. My problems started almost 3 months ago with a sudden hives rash on my legs, arms and part of my upper body. On the next day my hands suddenly got swollen and have stayed like this ever since. It is not extreme but I cannot wear my rings any longer. I visited an allergist, rheumatologist, dermatologist. I had a positive ANA 1:320. The test also showed other abnormalities - mild anemia, bilirubin that was higher than normal. The ana profile showed that I have scl-70 but also dfs-70. It is a totally different scale that the one you are referring to in posts that I read. The upper limit was 6 and I have 30 scl-70 and 60 dfs-70. Additionally I have been very fatigued, had nausea at times, swollen knees. RF also tested slightly positive. In spite of all this the first rheumatologist I visited said I was fine and I should just forget about it and go on with my life. Meanwhile I consulted an immunologist and tests were rerun. My second ANA screening a couple of weeks later was 1:1280. I switched the doctor and the new one said I only have a dysfunction of the immune system but still was prescribed Plaquenil which I have been taking for 6 weeks without really getting any better. The doctor stressed many times that I should calm down etc. The problem is that I just don’t feel well and I have a hard time functioning. I am constantly very tired, sleepy, brain fog, racing heart when walking. My whole hands and arms hurt for a while and I had neuropathy. I don’t even know what kind of responses I am looking for, I just want to hear from someone who has gone through the same. Thank you in advance
  21. Earlier
  22. Hi Michelle.....welcome to the forums, even though no one wants to be here!!! My son was diagnosis'd, at age 18, because of esophageal testing and + blood work. At the time, that was his main complaint. He was later diagnosis'd with UCTD, Undifferentiated connective tissue disease, and given the drug, Plaquenil. He's now 13 years in to the disease and it rarely causes major issues. There have been so many medical advancements that reading the web can cause unnecessary anxiety. Finding a good rheumatologist/specialist is top priority. Reduce the stress/anxiety is another top priority. Read the updated medical articles on this site......not random web articles that stress you'll turn to *rock* and die a horrible death within a couple of years!!! Take care, everyone. Margaret Mom to Gareth, DS/ASD
  23. It May Be Possible to Counter Some of the Genetic Risk of Alzheimer’s With These Lifestyle Changes. The researchers found that people who reported healthier lifestyles overall had lower levels of Alzheimer’s dementia. Time Healthland, 07/14/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. Quiltfairy, So sorry about losing your mom. Sounds like she put up quite a fight. Losing my mom, although 13 years ago, was the hardest thing I've ever had to deal with, And I've had some really challenging stuff - I hope your loving memories serve to comfort you during this next period of time, Warm thoughts, Nancy HG
  25. So sorry about your loss of Toby! They are just like family members and the grief is gut wrenching! I've lost two and my little chi has just months of life, Don't even know how I'll get through that, But I'll jump off that bridge when I come to it,. Regards, Nance HG.
  26. Ah is it okay to include coffee, ice cream and pretzels? And reading or coloring or listening to music. I usually feel better in the am, then tank around 3-4. REALLY tank! Not so fortunate for my later in the evening patients (I'm a psychologist). I write a lot, Sometimes a letter to a friend who sends me letters back the old fashioned way, but often just whatever pops into my head, And does everyone by now know that you can get some guided meditations at your app store? All of that only sometimes works. Nance HG
  27. I have four little rescued, all Chihuahua mixes, They are my therapy on bad days. So much fun!! Unfortunately, the second week after I was officially diagnosed. with scleroderma my love of my life little chi named (aptly) Princess was given the dreadful diagnosis of the aggressive, t cell type of lymphoma, Without treatment she would have had only weeks (I literally came on in two weeks), so we're all in for the (gulp11$12,000) treatment. Even if she does go into remission from the chemo, ( and she's doing marvelously after two treatments, you'd never know anything was wrong) it probably buys us 6-9 months give or take. So I am hoping for a miracle but preparing for the worst,. We won't let her suffer. Sad post, sorry. The three other dogs are aware somehow that there is something wrong with her? She's our little alpha, Don't know what I'll do without her,. Animals are just like family members, aren't they? Fondly, Nance HG
  28. Hi all, It's just so nice to meet others who have scleroderma. I just want to rant, Having awful Saturday, in which fatigue and malaise allowed me to do not one single useful thing. I have a lot of those days. Want to pluck my eyebrows out, one by one!! Husband who works all week (I can only do 2 days now) is stuck doing all the house work, leaving me feeling guilty and useless. Anyone relate? People who don't understand fatigue say "Cant you just push through it?" which sounds a lot like "Suck it up:". No, I can't, My body is made of marble and I can hardly move, Doing any little thing is leaving me short of breath,. You can never predict these days, and maybe tomorrow will be better. Or not. I should be grateful that I made it to 63 and some people feel like this much younger. Just in a mood,. Thanks for listening and hope to get to know you all better., I have been a trauma psychologist for 30 years so if I can ever help anyone out with resources, please let me know. Nance HG
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