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  3. Hi Pinky, Welcome to these forums! I'm sorry to hear that your daughter has been diagnosed with morphea and send my best wishes to you. UVA1 phototherapy is now the recommended first-line treatment for morphea. I've included a link to our listed scleroderma experts, which includes our expert in India, Dr. Pravin Patel, Rheumatology Consultant, Aditya Birla Hospital Marg, Chinchwad, Pune, India. The list does include other experts worldwide, so I hope you'll be able to get satisfactory treatment for your daughter. Kind regards,
  4. Targeting of dermal myofibroblasts through death receptor 5 arrests fibrosis in mouse models of scleroderma. In vivo, TLY012 reverses established skin fibrosis to near–normal skin architecture in mouse models of scleroderma. PubMed, Nat Commun, 2019 Mar 8;10(1):1128. (Also see Fibroblasts) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Hi My daughter is 6 years old and has been diagnosed with Morphea in India. Can anyone suggest me a good doctor in any part of world for same. Thanks, Pinky.
  6. Last week
  7. Sleep myths may hinder good sleep and health. Wrong pronouncements and widespread beliefs about sleeping, what quality sleep means and how to achieve it, can do more harm than good, researchers argue. Reuters Health, 04/19/2019. (Also see Sleep Disorders and Illness) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. Prevalence of fibromyalgia among women with deep infiltrating endometriosis (DIE). The estimated prevalence of fibromyalgia was higher among women with DIE and women with DIE and positive fibromyalgia screening had lower health–related quality of life. PubMed, Int J Gynaecol Obstet, 04/11/2019. (Also see Fibromyalgia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. Autoantibodies are present before the clinical diagnosis of systemic sclerosis (SSc). Our findings demonstrate that relevant seropositive autoantibodies often precede the clinical diagnosis of Ssc/no scleroderma renal crisis (SRC) and SSc/SRC. PubMed, PLoS One, 2019 Mar 26;14(3):e0214202. (Also see Antibodies) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. Stress disorders tied to increased heart disease risk. People who suffer from conditions like post-traumatic stress disorder (PTSD) may be more likely to develop cardiovascular disease, a Swedish study suggests. Reuters Health, 04/19/2019. (Also see Stress) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 05/21/2019.
  12. Is high–frequency repetitive transcranial magnetic stimulation (rTMS) of the left primary motor cortex superior to the stimulation of the left dorsolateral prefrontal cortex in fibromyalgia syndrome? Significant improvements in physical role functioning, physical functioning, depression, and general health perceptions were achieved in active rTMS groups. PubMed, Somatosens Mot Res, 2019 Apr 8:1-7. (Also see Treatments for Fibromyalgia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Cannabinoid derivatives acting as dual PPARγ/CB2 agonists as therapeutic agents for systemic sclerosis (SSc). Altogether the results indicate that dual PPARγ/CB2 agonists qualify as a novel therapeutic approach for the treatment of SSc and other fibrotic diseases. PubMed, Biochem Pharmacol, 2019 Feb 27;163:321-334. (Also see Endocannabinoid System) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. Earlier
  15. Hi Jacob, Thankfully, I don't have any skin involvement on my face, so can't advise you from my own experience. However, I understand from friends who have suffered with facial skin involvement, that the skin feels very tight and uncomfortable. I've included a link to our medical page on Scleroderma Skin Involvement, which I hope you'll find helpful and informative. However, I would suggest that if you're experiencing symptoms which are worrying you, you should contact your doctor, or preferably a listed scleroderma expert, in order to receive the correct advice and treatment. Kind regards,
  16. Hi Alex, Welcome to these forums! Please note I have no medical training, but I would be surprised if taking collagen protein for the last month would have triggered scleroderma. The symptoms you describe could relate to any number of health problems and scleroderma is a complex and very difficult disease to diagnose; it certainly can't be diagnosed by putting a few symptoms into a search engine and then hoping for the best. Of course, it's not beyond the realms of possibility that they could be caused by scleroderma, but I would say it was fairly unlikely. We do have a medical page on Collagen Injections, Face Lifts, and Scleroderma, which may be of interest to you. However, if you have health symptoms which are bothering you, then I would suggest you contact your doctor for professional advice and any further treatment which may be required. Kind regards,
  17. Dear friends, When the disease start affecting the face, does it start with hurting? Do you feel it? How does it feel? Thank you, Jacob
  18. Hi, my name is Alex and I found your guys' website doing some research on too much collagen in the body. Now I believe I may have caused this to myself without even knowing since I started taking collagen protein. I have been taking it for a month and I have taken more than the the daily serving only because I never knew too much collagen was bad. I had gone to the ER on Monday and they said all my blood work was fine, but I had heart arrhythmia, but that I was fine. But I don't feel fine. My joints have been hurting lately. My right elbow, sometimes left. My wrists both but not as much as my right elbow. I feel cold all the time. I have tinnitus, which I feel has gotten worse. I was dieting and I thought my weight loss was due to that but now I can imagine this must've had an effect on it. I'm at 135. I was 189 in September of last year. Sometimes I feel more tired than I think I should be. I had insomnia for the past week, it's gotten a little better. I need info on this and if it can be reversed, any diet changes or info would be greatly appreciated.
  19. Older people feel more youthful when they also feel in control. Older adults may feel younger than their age on days when they feel most in control of their lives, a small study suggests. Reuters Health, 04/19/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. Amplifying the concept of psoriatic arthritis: The role of autoimmunity in systemic psoriatic disease. The purpose of this review is to describe the new pathogenetic mechanisms and the different clinical pictures of Systemic Psoriatic Disease. PubMed, Autoimmun Rev, 04/05/2019. (Also see Psoriasis and Psoriatic Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  21. Hi Julia, I am at the same situation. Tested positive for ANA and ACA one week ago. But no symptoms only gerd. I am not sure if Rainbow is going to reply to your comment but if you click on her name it will take you to her recent posts. Good luck! Jacob
  22. Hi Jacob, Welcome to these forums! I'm sorry to hear that you've had worrying symptoms and positive blood tests. Regarding this, please see our sticky thread here. As you will see from that thread, it is quite possible to have positive blood tests and yet never go on to develop full blown scleroderma. This is probably why your rheumatologist has suggested waiting to see if anything further comes to light, which could help with a more definite diagnosis. I've included a link to our medical page on CREST (aka limited scleroderma) to give you some more information. Kind regards,
  23. Phenotypes determined by cluster analysis and their survival in the prospective EUSTAR cohort of patients with systemic sclerosis (SSc). Our work suggests that restricting the subsets of SSc patients only to the cutaneous involvement may not capture the complete heterogeneity of the disease. PubMed, Arthritis Rheumatol, 04/10/2019. (Also see Cluster Studies) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 05/16/2019.
  25. Hi Jo, thank you, I'm not sure if I dare look at mortality page. I want to, but I have terrible health anxiety, when I googled I read 3 to 15 years and I've cried all day. I'm terrified. I know I need to shake myself up; I'm normally such a positive person. Google isn't kind.
  26. Dear Friends, I am very new to this forum, living in California. I had a sore throat, joint pain, and fever three weeks ago. I went to the Emergency room, they did some blood work and I came back home. All symptoms disappeared in two days after my ER visit, I only used ibuprofen for it. One of my test came back, that was positive strep throat. My other results come back after a week. It shows positive ANA and positive Anticentromere. I have no other symptoms until I started searching the result online, I saw it is related to Crest Syndrome. I was stressed out and started feeling sensation and pain into my fingers. Yesterday had an appointment with rheumatology Doctor. She examined me and asked several questions. She said at this point there is no evidence to show that you have the disease (only my positive blood work), and asked me to repeat the blood work in six months. I don't have any other symptoms, but I have acid reflux in the last 15 years (I am 36 male). My dad also has acid reflux. Is there anyone at this forum to experience the same thing. Thank you very much for the reply. Jacob
  27. Hi Julia, Welcome to these forums! I'm sorry to hear that you've been recently diagnosed with limited scleroderma and send my best wishes to you. Whereas I can understand your concern, there is really no need for immediate panic; as you can see from earlier posts on this thread, many of our members (myself included) have found that in a lot of cases this disease does stabilise and it is quite possible to live a relatively "normal" life, despite having scleroderma. Of course, without the benefit of second sight, it's not possible to tell you how your particular disease will pan out; however, I would emphasise that it is very important to be treated by a listed scleroderma expert, to ensure that you receive the best and most appropriate treatment. I've included a link to our medical page on Prognosis and Mortality; again everybody experiences different symptoms and severity, which is what makes this complex disease so difficult to diagnose correctly. As this thread is eleven years old, I think it's fairly unlikely that you'll receive a reply from any of the posters. However, I have been diagnosed with limited scleroderma for the last ten years and have no intention of dying in the foreseeable future (barring my being run over by a bus, or some such eventuality. ) The best thing you can do is equip yourself with as much knowledge of the disease as possible and adopt a positive attitude, which should stand you in good stead for any future developments. Kind regards,
  28. Hi rainbow , I have a similar story; just diagnosed and terrified with all I'm reading. I have positive ACA and Raynaud's, and mild reflux on lansoprazole; had both of these for years alongside underactive thyroid and have been diagnosed with mild limited systemic scleroderma. I'm so scared, how are you doing now? Can anyone reassure me I feel like I'm living life on the edge of uncertainty, terrified of not being able to swallow. Hi Ann, I'm newly diagnosed , similar to how you were. How are you now please? I'm going through the scared phase. Kind regards, Julia
  29. Why Does Exercise Guard Against Cancer? One of the most important benefits of exercise is in how it reduces our risk of developing a number of types of cancer – especially colorectal cancer. New York Times, 04/22/2019. (Also see Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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