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Scleroderma Foundation
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eLetter #696 | January 27, 2017  

SPIN Survey for Family Members or Friends of People Living with Scleroderma

Support Group LogoDr. Brett Thombs, a researcher at McGill University in Canada, seeks current or past informal caregivers of people diagnosed with scleroderma to complete an online survey about their experiences providing care and support for a family member or friend with scleroderma.

The survey can be completed from online anywhere and will take approximately 30 to 40 minutes to complete. Participation is completely voluntary, and all responses will be kept anonymous. Participants must be 18 years or older, and must currently or previously have helped to provide support or care for a friend or family member with scleroderma.

More info (English) >>

More info (French) >>

Body Image and Chronic Illness

The team at Caring Voice Coalition has offered a good article about body image and chronic illness. Some ways that a chronic illness, like scleroderma, can impact your body image are through:

  • Your physical appearance and impact
  • Low energy and increased pain make exercise and activity difficult
  • Severe flare-ups and relapses can cause hospitalizations and long stays in bed

Read more about how your body image can affect your overall well-being >>

Time is Almost Up!
Research Survey Closing Soon

If you are a patient with systemic scleroderma(systemic sclerosis), you are being asked to participate in a research study on the role of environmental factors in scleroderma. Environmental factors are suspected to play a role in the development of scleroderma. This is a research project being conducted by the Medical University of South Carolina (MUSC). 

You can only participate in this survey if you are a patient with scleroderma. Your participation in this research study is voluntary.

The study involves filling an online survey that will take approximately 15 minutes. Your responses will be confidential. The survey questions will be about the type of your disease, your first symptom, the address(es) you live/lived at, and your occupation(s) when you developed your first symptom or prior to developing your first symptom. We will also collect identifying information such as your name, age, gender, race, date of birth, current mailing address, and e-mail address. We will review public records on air and soil quality for your address to determine if there may be common environmental factors associated with scleroderma.

We will keep your information confidential. To help protect your privacy, your survey answers will be coded and will be stored securely such that only the members of the research team will have access to your identifying information.

If you have any questions about the research study, please contact Dr. Carol Feghali-Bostwick or Dr. Celine Ward at (843) 972-8944 or at wardce@musc.edu. This research has been reviewed and approved by the MUSC Institutional Review Board for research involving human subjects.

We appreciate your participation in this survey. Please complete the survey once only. Click on the link below to begin. Once you begin the survey, you will need to complete it as the information will not be saved.

Take the survey >>

If you are unable to open the survey using the link, please copy and paste the URL into your browser: https://redcap.musc.edu/surveys/?s=KADL7CLTEC

10 Tips for Winter

As temperatures drop this winter, the American Red Cross offers ten steps people can take to stay safe during the cold weather.

1. Layer up! Wear layers of lightweight clothing to stay warm. Gloves and a hat will help prevent losing your body heat.

2. Don’t forget your furry friends. Bring pets indoors. If they can’t come inside, make sure they have enough shelter to keep them warm and that they can get to unfrozen water.

3. Remember the three feet rule. If you are using a space heater, place it on a level, hard surface and keep anything flammable at least three feet away – things such as paper, clothing, bedding, curtains or rugs.

Read the full list >>

 
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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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