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Scleroderma Foundation
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eLetter #659 | May 13, 2016  

Action Alert!

Ask your Congressperson in the House of Representatives to cosponsor the Scleroderma and Fibrosis Research Enhancement  Act (H.R. 3666)

The National Institutes of Health (NIH) is part of the federal government and the world’s foremost medical research entity. On an annual basis NIH supports research projects that advance our scientific understanding of the mechanisms of various diseases, including scleroderma. Medical breakthroughs facilitated by NIH research are often what industry uses to develop new therapies, cures, and diagnostic tools.

Depending on how scleroderma manifests itself it can cause fibrosis in various systems of the body. NIH supported scientists are currently studying the different body systems as well as scleroderma, pulmonary fibrosis, liver fibrosis, and other related conditions. However, this research is not presently coordinated and cross-cutting information is not shared in a meaningful way, which delays overall progress when working to cure fibrotic illness.

Click here to be part of the solution >>

How Sugar, Not Fat, Raises Your Cholesterol

Sugar-290x290.jpgWhen you go to the doctor and get a cholesterol reading, you may be cautioned against eating high-fat foods. But very little fat from foods becomes cholesterol in your blood. What produces cholesterol is rather the excessive consumption of carbs at any one time. The cholesterol and triglycerides in your bloodstream come not from consuming excess fat, but rather, from consuming excess glucose.  The good news is that there is a solution: rebalance your carbohydrate metabolism.

Video:  Q & A on Scleroderma Topics

q&a.jpgThe Federation of European Scleroderma Associations (FESCA), has released a series of videos that were recorded at the 4th Systemic Sclerosis World Congress earlier this year.  The workshops cover a variety of different topics and features.  This session answers multiple questions including "What Do We Know about Scleroderma Now" and "What Will Help My Digestive Problems."

Click here to watch >>

10 Essential Facts about Caffeine

coffee.jpgCaffeine is a plant product that is most commonly found in coffee beans, tea, soft drinks, cocoa and chocolate. Caffeine is also found in some prescription and non-prescription drugs, including cold, allergy and pain relievers.  But did you know that caffeine is recognized as an addictive substance by the World Health Organization?

Click here for more caffeine facts >>

National Study Opportunity

Food Choices and Scleroderma

Many people living with scleroderma perceive that what they eat influences their symptoms related to scleroderma.  This study is inspired by people attending the Scleroderma Foundation Patient Conference who expressed a desire for research such as this to be conducted.

If you are a person with scleroderma and you experience related gastrointestinal symptoms such as bloating, cramping, nausea, vomiting, regurgitation, diarrhea, constipation etc., you may be interested in participating in this research study.

This is a national study run by the New Orleans Scleroderma Patient Care and Research Center (Lesley Ann Saketkoo, MD, MPH, Tulane University Lung Center) using telephone counseling and online questionnaires to assess the impact of various diets that might impact symptoms in scleroderma. 

Click here for more >>


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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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