Jump to content
Sclero Forums

All Activity

This stream auto-updates     

  1. Today
  2. Hi Pinky, Morphea is a type of localised scleroderma. A 2003 large multinational study found that 25% of people with localized scleroderma had at least one other non-skin symptom, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non-skin symptoms and none of the people in the study developed systemic scleroderma during follow up. Morphea can burn itself out after 3 to 5 years, even without treatment. There are various Treatments for Morphea. The current recommended first line treatment, in most cases, is UVA1 Phototherapy. Kind regards,
  3. Yesterday
  4. A simplified lung ultrasound (LUS) for the diagnosis of interstitial lung disease in connective tissue disease: a meta–analysis. We found a modified and simplified method of LUS, by scanning 14 lung intercostal spaces in a short time, which had a very high sensitivity and specificity. PubMed, Arthritis Res Ther, 2019 Apr 11;21(1):93. (Also see Connective Tissue Disease and Pulmonary Fibrosis Diagnosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Scleroderma Hotline and Email Support Specialists are eager to help people affected by scleroderma and related illnesses, such as pulmonary hypertension. Simply email [email protected] or call our Hotline at 1-800-564-7099. Ask for your free information packet. Posted 05/26/2019.
  6. Last week
  7. 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,
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 05/21/2019.
  15. 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.
  16. Earlier
  17. 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.
  18. 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,
  19. 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,
  20. 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
  21. 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.
  22. 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.
  23. 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.
  24. 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
  25. 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,
  26. 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.
  27. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 05/16/2019.
  1. Load more activity
×
×
  • Create New...