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eLetter #693 | January 6, 2017  

Study Finds Chronically-ill Women Who Don't Use Internet Tools May Have More Issues

A study from Oregon State University published in the Journal of Women's Health said that chronically ill women may struggle with worse health if they don't use the internet.

"A significantly larger proportion of non-internet users reported needing help learning what to do to manage their health conditions and needing help learning how to care for their health conditions," said researcher Carolyn Mendez-Luck. She's an assistant professor in the School of Social and Behavioral Health Sciences at Oregon State University.

The study analyzed information from hundreds of women 44 years and older with at least one chronic condition. Less than half of the participants did not have access to the internet to learn from others about a chronic disease, and less than 1 in 5 took part in online chats about their conditions.

Read more >>

Join Inspire!New to Online Resources?
Join Inspire

The Scleroderma Foundation partners with Inspire to provide an online discussion board for patients and caregivers. It's a great resource if you've been newly-diagnosed or are looking for a safe place to discuss your illness and are unable to make it to a physical support group meeting.

Upcoming Patient Education Events

Carol Feghali-Bostwick

Patient education is one of the Scleroderma Foundation’s guiding tenets.  As such, we’re pleased to share an upcoming educational offering with you in hopes that you’ll stay tuned to future e-letters or visit our regularly-updated Patient Education Calendar for future opportunities in your area.

On February 4, the Foundation’s South Carolina Chapter will proudly present its 7th Annual Amy K. Parrish Patient Education Conference.  The event will be held on the campus of the Medical University of South Carolina in Charleston and will feature an impressive lineup of speakers.  Scleroderma Foundation National Board Vice-Chair Dr. Carol Feghali-Bostwick (shown right) will present an update on her research as well as provide tours of her research laboratory. Please note tours will be held on Friday, February 4.  Since space is limited, those interested must call the Chapter at 864-617-0237.

Paralympian swimmer Lindsay Grogan is sure to inspire attendees with her inspirational story of overcoming physical challenges brought on by scleroderma to compete at the 2016 Rio Paralymic Games. Dr. Eric S. Zollars, keynote speaker, will fill the audience in on how to effectively manage fatigue, one of the most common problems encountered by patients.

For more information about this event, check out the event page. Click HERE to visit the national calendar of events to find this and other events that may be near you.

Regret and Chronic Illness

Are you ever frustrated and full of regret because you're living with a chronic illness, like scleroderma?

Sneha Dave, a freshmen at Indiana University, wrote a piece for U.S. News and World Report about the regret she feels from living with ulcerative colitis and how to cope with those feelings. In her piece, she discusses letting go, control, despair, rest, guilt and how to find joy in your life.

Cutting Out Gluten? Tips for What to Eat

Tips for a gluten-free diet
It may seem difficult to find something to eat when you're on a gluten-free diet. However, The Celiac Disease Foundation provides tips for those on a gluten-free diet. You can also find resources to help with:

  • How to read food labels
  • Gluten in medications
  • Sample meal plans
  • Easy-to-prepare recipes

Read 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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