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Ask Stanford Med, Autoimmune Disease, Chronic Disease

Save the date: Ask Stanford Med Google+ Hangout on Scleroderma April 2

Save the date: Ask Stanford Med Google+ Hangout on Scleroderma April 2

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.

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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

11 Responses to “ Save the date: Ask Stanford Med Google+ Hangout on Scleroderma April 2 ”

  1. Christine Says:

    Would love to participate, but I’m not sure where to go on Google+ to find the hang out (when the time comes). I don’t see a Stanford Med profile. Any further details? Thanks.

  2. Lia Steakley Says:

    Great question, Christine.

    We will publish another blog entry with details on how to watch the live video broadcast on YouTube. Additionally, we will also tweet a link to the hangout on the @SUMedicine feed and post it on our Facebook page when the broadcast begins. You can also follow the discussion using the hashtag #AskSUMed.

  3. Sheri Rose Says:

    I do not use Twitter but have questions – how about Facebook or just regular email to submit? As to Christine’s question above, without Twitter how does one access as well?

  4. Joan Brandt Says:

    What can you tell us about the latest research on testing numerous specific antibodies and its promise in diagnosis and as a predictive tool in determining how scleroderma will manifest in different individuals?

    I recently attended a Scleroderma Symposium in Naples, Florida where Dr. Thomas A. Medager Jr included this subject in his presentation. However, he spoke too fast for me to take good notes. I would like to follow research in this area and to know if anything is being done to increase the knowledge of the usefulness of this tool by the medical community, particularly those who treat patients with scleroderma.

  5. Maria Says:

    With systemic scleroderma and pulmonary fibrosis.
    If diffusion capacity keeps dropping, but no change in HRCT, and no PAH, what would a doctor look to to explain these drops in diff capacity? Thank you.

  6. Jay Reed Says:

    What can be done about wrinkles around the mouth area and chin. Is it safe to have Botox or anything else.

  7. Mattie Says:

    I have been living with Scleroderma for 18 yrs. I have question regarding how to treat lines around the lips/mouth. Mine are really bad, and I hate them! I want to know which products can help and any suggestions. Not sure if I am going to be available for the live chat, but would love my question to be addressed. Thanks! Mattie

  8. Maryann Rozzell Says:

    What is known about diet and autoimmune disorders? Of my three adult children one who has been vegetarian was diagnosed with Graves dis. and one who has been vegan diagnosed with lupus and scleroderma. The third, who is an omnivore is healthy at age 50. My 17 yr old grandaughter has hyperthyroidism and is still undergoing testing. She has been vegetarian for two years.

  9. Stephen Says:

    Having lived with systemic scleroderma for the past thirty-three years, one of the more perplexing challenges of the many I have faced has been trying to find assistance in treating digital ulcerations. I have been referred to orthopedic and hand surgeons, wound care centers you name it and as soon as they find I have scleroderma I’m told that they are sorry but they can’t help me. I have been forced to rely on my military medical training as a corpsman and perform my own digital surgeries and treatment to prevent the loss of my fingers. Now that I am older and only have partial use of my hands as a result of this condition self treatment is becoming more challenging but at least I have been able to help myself. Any advice or recommendations you could make that would help others having similar problems and where they might seek help would be appreciated. Thank you in advance for your efforts on our behalf.

  10. Ivette Sinquimani Says:

    I’ve never used Google + hangout. What do I need to do?

  11. Lia Steakley Says:

    Hi Ivette,

    To watch the live discussion today, please use one of the following links:

    Google+ https://plus.google.com/events/comtfn8iq8cl3452odbrmd7hcf0
    YouTube http://www.youtube.com/watch?v=_tPPFUCEGjI

    These links will stream the discussion once the live broadcast begins.

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