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Scleroderma Foundation
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eLetter #704 | March 24, 2017  

Name our 2017 Conference

Check out the image to the right to learn how you can enter a contest to come up with a name for our 2017 National Patient Education Conference, thename that conference graphic FINAL.jpg planet’s largest patient-focused scleroderma event.  The deadline is Monday, March 27 at 5 p.m. eastern so don’t delay, enter today.  The winning entry receives a foundation prize pack.

Support Conference Scholarship Program

Help make the dreams of attending the 2017 National Patient Education Conference a reality for our patients by making a gift today to support scholarships to the conference.  Last year, nearly 60 adults and childrenArmistead experienced all that the event had to offer due to the generosity of donors. Thanks to an exra generous donor, all gifts will be matched.

Follow this link to contribute.

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

If you are a person with scleroderma and you experience relatedTulane.jpg 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. 

Some facts about the research study:

-          The diet lasts for 4 weeks only.

-          You are not able to choose your diet.

-          We can’t tell you what is special about your diet until after the 4                    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 we 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.

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

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 CTDresearch@tulane.edu with your name and telephone number. Dr. Saketkoo or Ms. Jensen will call and/or email you.

 

Last Call for Support Group Leader Survey

Researchers north of the border are conducting the second phase of a survey geared towards scleroderma support group leaders.  Led by Dr. Brett Thombs, a group at McGill University’s Jewish General Hospitaljewish general is looking for patients who have or are leading a support group to complete the anonymous survey.  The group greatly values for feedback as you assess your experiences as a support group leader as it will help mold a curriculum for prospective leaders across the United States and Canada.  

Follow the link to complete.

 

Great Tips on Making Decisions Related to a Chronic Illness

Living with a chronic illness means making regular and sometimes tough  medical decisions. While some conditions require a clear treatment plancare giver.jpg with no alternative options, other times your doctor will describe multiple options, tests, prescriptions or combinations of strategies to help manage your health.

Check out the rest of the article here.

 
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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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