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Share your scleroderma story

by Marie-Eve Carrier | Apr 15, 2016

Help others to live better with scleroderma

The Scleroderma Patient-centered Intervention Network SPIN (SPIN) is an organization of researchers and health care providers, which is working very closely with patient organizations and people living with scleroderma around the world. SPIN’s research is dedicated to learn more about important problems faced by people living with scleroderma, and also to develop online self-help programs (“tool-kits”) to support people with scleroderma cope with living with the disease.

Individuals living with scleroderma are the best resource to help others live better with the disease. Therefore, we are looking for individuals with scleroderma to share their experiences of living with the disease in a brief video testimony, as well as strategies that have helped you live better with scleroderma.

We are looking for individuals with scleroderma to share their stories about:

Physical symptoms of scleroderma:

How the following symptoms have impacted your life:
Sleep problems
Skin problems and itch
What techniques and/or activities have you used to help cope with these symptoms? (e.g. exercise, relaxation, balancing activity and rest)
Emotional challenges of scleroderma:

What are some of the emotional challenges that you have faced due to scleroderma?
How do you cope with the emotional challenges of scleroderma?
Appearance changes:

How have appearance changes related to scleroderma negatively impacted your life or how you feel about yourself?
How have appearance changes led to awkward or negative social interactions (e.g., people not recognizing you, feeling uncomfortable in social situations, etc.)
How you have handled these social interactions, either successfully or unsuccessfully?
How you have coped with changes to your appearance due to scleroderma?
Disease management & motivation:

What would be your best tips for others about:
Setting goals for yourself and monitoring their progress
Staying motivated to stick with your goals over time
Managing your healthcare

We will record many of these videos during the 2016 Scleroderma Foundation National Patient Education Conference at the Sheraton Hotel in New Orleans, Louisiana. Members of the SPIN team will be present to record your experiences. The recording session will take about 45 to 60 minutes of your time, and would be scheduled when it is convenient for you, between July 29th and July 31st.

Contact information:

Toll-Free: 1-800-370-5099

We look forward to hearing from you!

Dr. Brett Thombs, Director of SPIN
Dr. Linda Kwakkenbos, Co-Director of SPIN
Marie-Eve Carrier, SPIN Coordinator

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