Systemic Sclerosis (systemic scleroderma) is a rare disease. Often, persons with scleroderma do not know other people with the disease. They may live in a state where there is no chapter of the Scleroderma Foundation or Scleroderma Research Foundation or in a community where there are no support groups available. The purpose of this internet-based self-management program is to give you the skills and confidence to manage your symptoms and impact of scleroderma, and to teach you strategies to help you advocate for yourself. Knowledge and advocacy skills need to be continuously woven, like a basket, into ones daily life. Managing a chronic disease involves lifelong learning and one’s “basket” should NEVER be complete.
Scleroderma is very complex and affects every person differently; each person is unique. Some of the modules on the website may not apply to you, but the information is provided so you will have it if you need it. There are also links to other websites if you want more information on a topic, because the purpose of this website is to give you skills to manage the disease.
The website has videos with audio; be sure your audio is on. However, if you do not want watch the videos, you can mute the sound on your computer and just read the text, which is below the video. Please read each of the modules, complete the learning activities, and look at the Resources that go with each module.
This work was (partially) supported through a Patient-Centered Outcomes Research Institute (PCORI) Assessment of Prevention, Diagnosis, and Treatment Options Program Award (CER-1310-08323), The statements and opinions presented in this self-management program are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or its Methodology Committee. This work was also supported by the National Institutes of Health, National Institute of Nursing Research Grant # RO3 NR009697 through the US Department of Health and Human Services and the University of New Mexico Health Sciences Center Research Allocation Committee. The details of the study can be found at www.clinicaltrials.gov (NCT02494401 ).