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Scleroderma Newsroom
Janey Willis, ISN News GuideHello, I am Janey Willis, ISN News Manager and ISN Asst. Webmaster. David Becker, ISN Assistant News Guide researches our Autoimmune News section. Assistant News Guides Lisa Bulman and Judy Tarro post these stories to our Sclero Forums. Stephen Dickson prepares our RSS Newsfeed.
Scleroderma Medical News
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Updated July 23, 2008
Dartmouth researchers discover gene signatures for scleroderma. Distinct genetic profiles can discern different groups of patients with scleroderma. This discovery of distinguishing molecular subtypes within the disease offers new insight into the complexity of a poorly understood and hard to treat illness and opens a window for better diagnosis and targeted therapies.Genetic Engineering & Biotechnology News. July 15, 2008. (Also see: Causes of Scleroderma and Types of Scleroderma)
Scleroderma
The registry of the German Network for Systemic Scleroderma: frequency of disease subsets and patterns of organ involvement. In this nationwide register, a descriptive classification of patients with disease manifestations characteristic of SSc in five groups allows to include a broader spectrum of patients with features of SSc. Rheumatology 2008 47(8):1185-1192. (Also see: Type of Scleroderma)
Systemic sclerosis and its pulmonary complications in the Netherlands An epidemiological study. This study clarifies the epidemiology of SSc in the Netherlands and confirms the frequent occurrence of pulmonary complications, based on 654 cases. M C Vonk. Ann Rheum Dis. Published Online First: 29 May 2008. (Also see: Pulmonary Involvement)
New survey of 1000 patients highlights burden of disease in scleroderma. The results highlighted the need for greater support for patients from healthcare professionals with almost a third of respondents stating they were not aware of the type of scleroderma they have. The deadly nature of scleroderma means that it is crucial for patients to have a good understanding and education of the disease they are forced to live with every day. A.H. Mawdsley. PAR0015. EULAR 2008. (Also see: Physician/Patient Relationship)
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Clinical Trials
U.S. Morphea Registry and DNA Repository
First U.S. Morphea Registry and DNA Repository for both Adults and Children Established.Southwestern Medical Center. Reposted 02/08/08. (Also see: Morphea and Research Registries)
Pulmonary Fibrosis
Pulmonary Fibrosis with Systemic Sclerosis Open Enrollment. Novartis Pharmaceuticals. Reposted 02/13/08.
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Autoimmune
Cost-Effectiveness of Abatacept in Patients with Moderately to Severely Active Rheumatoid Arthritis (RA) and Inadequate Response to Tumor Necrosis Factor-α Antagonists (anti-TNF). Abatacept is cost-effective by current standards of medical practice in patients with moderately to severely active RA and inadequate response to an anti-TNF. Montserrat Vera-Llonch. J Rheumatol July 15 2008. (Also see: Rheumatoid Arthritis and TNF Inhibitors)
The long-term effectiveness of steroid injections in primary acromioclavicular joint arthritis: A five-year prospective study. Local steroid injection is an effective treatment for primary isolated acromioclavicular joint arthritis. Improvement continues for at least 12 months. The benefit is felt up to 5 years. Pain relief tends to diminish long-term. (ScienceDirect) Saqif Hossain. Journal of Shoulder and Elbow Surgery 2008. (Also see: Arthritis)
Arthritis gene therapy's first death. The case currently under discussion has given the field a scare, but it seems that the authorities are not holding gene transfer responsible for the subject's tragic death. The logic behind a local, intra-articular gene therapy approach to treating arthritis remains as compelling as it did when first published over 15 years ago, and we continue to believe it will eventually form part of the clinical armamentarium. Arthritis Research & Therapy 2008, 10:110. (Also see: Arthritis)
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New Personal Stories
Jaci: MCTD and Autoimmune Hepatitis Out of fear of going back to the doctors, I tried just to live with it, whatever it was. What I found strange was that nobody seemed to noticed how terrible I was feeling, not even the doctors...
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Media & Stories
Local man completes stem-cell therapy. Randy suffers from systematic scleroderma, a disease that affects the organs of the body and hardens the skin. The Dupreys and their young son, Alek, went to Duke University so Randy could undergo research-based stem-cell therapy to try to help his condition. PressRepublican.com. 06/30/08.
Fibromyalgia: Little understood, often frustrating. You wouldn't know it by looking at her, but at any given moment Dana Poole hurts all over. In addition to widespread pain, patients may complain about fatigue and sleep disturbances, depression, headaches, irritable bowel syndrome and heightened sensitivity. CNN.com./Health. July, 2008. (Also see: Fibromyalgia)
How Cells Die Determines Whether Immune System Mounts Response. Every moment we live, cells in our bodies are dying. One type of cell death activates an immune response while another type doesn't. This finding eventually could have important implications in the treatment of autoimmune diseases and cancer. NewsWire. 07/15/08. (Also see: Causes of Scleroderma and Autoimmunity)
Ask The Mayo Clinic: Causes and treatments for pulmonary fibrosis. I've had numerous bouts of pneumonia over the years. Now I've been told that I have pulmonary fibrosis. Can you tell me what to expect and is there anything I can do? SeattlePI.com. 06/08/08. (Also see: Pulmonary Fibrosis)
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ISN Website News
Tackling Scleroderma!
Tackling scleroderma in July 2008 through donations, memberships, books, brochures and awareness bracelets:

Sonya Eastmond
Microsoft
Tara Brown
Michael Wozniak
Actelion
Kathy Baxter
United Way of Snohomish County
Winn Schillberg
Lee Warner Stainbank
Jacquelyn Martinez
Samantha Banks
Carol Sheehan
Updated 07/23/08.
Earl Mann's Family Visits Sclero.org!
Mann's FamilyThe Earl Mann's Family visited ISN headquarters in Minnesota, following completion of his second marathon-running ISN fundraiser in Missoula, Montana. Pictured from left are his wife, Lanie; Shelley Ensz, ISN Founder and President; Earl Manns, ISN Fund Raiser, and their daughters Faith, Mya and Madison. (Also see Earl Manns, and Shelley Ensz.) Posted 07/21/08.
Scleroderma Can Koozies Now Available!
Scleroderma KooziesScleroderma Can Koozies! Keep your hands warm with cold pop cans and help raise awareness of scleroderma at the same time! Can koozies now available, $2.50 each, minimum order of 4 ($10), please. Posted 07/21/08.
2008 Scoring for Scleroderma Recap!
Scoring for SclerodermaLisa Bulman's 3rd Annual Scoring for Scleroderma Soccer Tournament was held Friday evening, June 20, 2008, at the Canton Sportsplex in Canton, Massachusetts. The event was a huge success, raising nearly $10,000 for scleroderma! Our special thanks to Platinum Sponsor, Actelion. Read more...
In Loving Memory of Kristin A. Hubartt
The nonprofit International Scleroderma Network thanks Gary Hubartt for his donation in loving memory of Kristin A. Hubartt. (Also see: Donations in Memory) Posted 07/14/08.
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