on March 25th, 2014 11 Comments
Updated 03-25-14: Readers are welcome to submit questions for our panelists in the comments section below. We’ll collect questions until 3 PM Pacific time on April 2. A selection of the questions will be answered during the live video conversation, which will be broadcast on the Stanford Medicine YouTube channel starting at 4:30 PM Pacific time. A future blog entry will provide details on how to watch the Google+ Hangout.
3-17-14: An estimated 300,000 Americans are living with scleroderma, a chronic connective tissue disease that is generally classified as one of the autoimmune rheumatic diseases. While hardening of the skin is the most visible manifestation of scleroderma, symptoms of the disease vary greatly among patients and the effects range from mild to life-threatening. Researchers are still working to determine the cause of scleroderma, and currently there is no cure for the disorder.
To foster conversation about this complex, rare disease, we’re partnering with the Scleroderma Foundation and Inspire, a company that builds and manages online support communities for patients and caregivers, for a Google+ Hangout about scleroderma research and progress being made to enhance patients’ quality of life. Among the panel of special guests are:
- Lorinda Chung, MD, director of the Scleroderma Center and co-director of the Multidisciplinary Rheumatologic Dermatology Clinic at Stanford. Chung is actively involved in clinical, translational, and epidemiologic research on systemic sclerosis and related connective tissue disease, and she’s the principal investigator on a number of clinical trials of new potential therapies for scleroderma patients.
- Karen Gottesman, patient services director for the Scleroderma Foundation of Southern California. Both a patient and a long-standing patient advocate, she is author of The First Year – Scleroderma, An Essential Guide for the Newly Diagnosed. Gottesman is also a member of the Scleroderma Patient-centred Intervention Network (SPIN), an international consortium of scientific researchers and clinicians organized to develop, test and disseminate psychosocial interventions to improve the quality of life for scleroderma patients worldwide.
Audience members are welcome to submit questions during the live video discussion via Twitter using the hashtag #AskSUMed. Please save the date and join us on April 2 at 4:30 PM Pacific Time.
Previously: Another piece of the pulmonary-hypertension puzzle gets plugged into place, Rules for living with a chronic illness, Patients with rare diseases share their extraordinary stories and Restoring hand function with surgery