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Scleroderma Foundation
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eLetter #705 | March 31, 2017  

And the winner is....

Thanks to the more than 50 participants who took part in our naming contest for the 2017 National Patient Education Conference.  We are humbled by the strongdiscovery for eletter.jpg  response and all the great entries.  There's tremendous creativity out there.  The choice was far from easy, and a winner has been selected.  Click the link below to watch a video of foundation CEO Robert Riggs announcing the winning entry and the name of individual who created it.

View the video! 

Sjogren's Awareness Month is Here

April is designated as Sjögren’s Awareness Month and we hope you will join us in educating the public about this complex disease and how it affects those who are living with it!AprilisSjogrensAwarenessMonth.jpg

Sjögren’s Awareness Month was first established in 1998 when New York Congresswoman Louise Slaughter read it into the Congressional Record. The Sjögren’s Foundation works to keep the spirit of national awareness alive this April on the 19th anniversary.   For more visit this link.

Food Choices and Scleroderma Research Study

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 Education Conference who expressed a desire for research such as this to be conducted.

If you are a person with scleroderma and you experience related

Tulane.jpg gastrointestinal symptoms such as bloating, cramping, nausea, vomiting, regurgitation, diarrhea, constipation etc., you may be eligible to participate in this research study.  It is 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. 
If you are interested in participating, you will be asked to provide consent and allow us to contact your doctor to send us a few recent lab results.

Some facts about the research study:

The diet lasts for four weeks only.

You are not able to choose your diet.

Study organizers can’t tell you what is special about your diet until after the four weeks.

The study is conducted by telephone and online.

There are questionnaires to fill out online or by telephone just before you start the study and during the last week of your diet.

All study diet options are known to be safe and healthy and should not affect weight gain or loss.

The study diets are guided by general instructions regarding food choices; there are no specific assigned meals; however, study organizers may provide recipes that you might be interested that fit with your diet.

Participants cannot have a positive test for celiac disease as this may confuse symptoms related to celiac versus scleroderma.

If participants are already on a special type of diet; if they desire to participate they may have to stop that diet for a few weeks before starting the study diet.  (Some exceptions to this are diabetic diets, low cholesterol or heart diets. These diets are allowed.

There is no monetary compensation for participation.

We hope to understand if any parts of a diet affect symptoms related to scleroderma.

You will be informed of the study results as soon as the analysis is complete!

If you are interested in participating, email with your name and telephone number. Dr. Saketkoo or Ms. Jensen will call and/or email you.


How to Beat Fatigue

Everyone gets tired from time to time. But when your need for rest seems excessive or becomes disruptive to your daily life, what once may havehow-to-beat-fatigue-arthritis.jpg been run-of-the-mill tiredness has morphed into full-fledged fatigue. Many people with autoimmune-related conditions experience fatigue.

Learn how you can live with and even beat fatigue in this article by our friends at the Arthritis Foundation.

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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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