Although scleroderma is derived from the Greek words meaning “hardness” and “skin,” its symptoms affect far more than patients’ epidermis. The complex, rare disease can cause damage to the vascular system, lungs, kidneys and gastrointestinal tract with potentially life-threatening consequences.
On Wednesday at 4:30 PM Pacific time, we’ll be hosting an Ask Stanford Med Google+ Hangout about scleroderma research and progress being made to enhance patients’ quality of life. The live video discussion was organized in partnership with the Scleroderma Foundation and Inspire, a company that builds and manages online support communities for patients and caregivers.
Our panel of special guests includes Lorinda Chung, MD, director of the Scleroderma Center and co-director of the Multidisciplinary Rheumatologic Dermatology Clinic at Stanford; Karen Gottesman, patient services director for the Scleroderma Foundation of Southern California; and Melissa Warde, who was diagnosed with scleroderma at age 15 and has lived with the disease for more than two decades.
Panelist will address a range of topics, including:
- Recent modifications to the disease criteria used in diagnosing scleroderma
- The importance of patients being screened for pulmonary hypertension
- The use of rating skin-thickness progression to help determine prognosis
- A patient’s perspective on participating in a clinical trial
- Efforts to develop online tools that enhance quality of life
- Tips on how patients can live life to the fullest despite this debilitating disease
To participate in the discussion, watch the broadcast on the Stanford Medicine YouTube channel. A link to the hangout will also be tweeted on the @SUMedicine feed and posted on the School of Medicine’s Facebook page once the broadcast begins. Only panelists will be featured on screen, so audience members don’t need to be camera ready to join the conversation.
The public is welcome to submit questions for panelists in advance of the discussion by posting them in the comments section below before 3 PM Pacific time tomorrow (Tuesday). Questions can also be submitted during the live video discussion via Twitter using the hashtag #AskSUMed.
Previously: Save the date: Ask Stanford Med Google+ Hangout on Scleroderma April 2, Another piece of the pulmonary-hypertension puzzle gets plugged into place, Patients with rare diseases share their extraordinary stories and Restoring hand function with surgery
Photo by Judit Klein