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Ask Stanford Med, Autoimmune Disease, Chronic Disease

Join Ask Stanford Med for a live discussion about scleroderma on Wednesday

Join Ask Stanford Med for a live discussion about scleroderma on Wednesday

hands_laptop_033114Although 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 2Another 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

8 Responses to “ Join Ask Stanford Med for a live discussion about scleroderma on Wednesday ”

  1. Jo S. Says:

    I am wondering if anyone else experiences a feeling of bugs crawling in there stomach and around my chest area. “Bug Crawling” is the best way to explain it. I don’t get it everyday I just notice it when I am very fatigued. I will even wake me from a sound sleep. My Rheumatologist gave me lyrica to take as needed but it did not work for me last night. She said she figured it was my nerve endings.

  2. Pat Guerre Says:

    My wife has been diagnosed with systemic sclerosis of the esophagus and intestines. She was diagnosed with RSD/CRPS years earlier. My question is: Is research focused solely on scleroderma, cause and treatment, or has research been more involved looking at autoimmune disorders that seem to often mimic or lead to other disease? It seems so many friends and people my wife talks with have one autoimmune disorder that then leads to another such as scleroderma.

    Thank You
    Pat Guerre

  3. Phyllis Hagmann Says:

    What is new on calcinosis? I have had Systemic Sclerosis for over 40 years. I have lost 3 portions of left fingers and 1/2 my left foot due to gangrene. I have been pain-free for the last 3 years. My new situation is these calcium deposits are growing to the point they hurt like a sharp knife if I touch affected body parts to hard surface. Some have been surgically removed, but my surgeon prefers not to operate because of my slow healing process and fear of gangrene again.

  4. Gina DiMartino Says:

    What is the recent statistics regarding children of those who have Scleroderma acquiring the disease? My mother died with Scleroderma at age 59. I am 49 and I have Raynaud’s that is noticeable during our cold, winter months but no other symptoms.

  5. bernetta smith Says:

    November 2009, my daughter was told she’s in the beginning of the last stages of Scleroderma. I was told to take her home and make her comfortable. January 2010, she had an emergency colon removal. When she was opened up, the scleroderma was very present inside her body. February 2014, she’s told she’s now in the last stage of Scleroderma. We’ve endure more than room here to tell. I want to know what to look for. I’ve seen her near death twice. Though she keeps her spirits up, I know she too is wondering what to expect. We fight to make life happen, not prepare for death. So, I’d appreciate more info on what to look for and what to do. Also… if anyone knows of someone willing to rent a 2-3 bedroom apt., with disability amenities and rent is on the low end, in St Paul, MN, I’d appreciate the lead. One of the things that’s taking my daughter’s life away early is the stress of so much that’s happened to her since and during battling scleroderma. It would comfort me to comfort her if she lived closer.

  6. Melissa Gerwig Says:

    I have been struggling with digestion. I have been on antibiotics 3 times since October for suspected sibo. The nausea, stomach aches, and extreme distended belly is horrible. Is there anything else I can do to aid these digestive problems?

  7. Gina Marie Guerre Says:

    I have systemic diffuse scleroderma. I am sick to my stomach every morning. It’s getting hard to keep my energy levels up. I have gotten many auto immune disorders since getting RSD/CRPS almost 13 years ago. My husband and I were told by one of my Dr.’s while in the hospital, that he predicted I had 1 year left. I just beat that 1 year mark. What else should I be aware of besides my lungs, esophagus, energy levels and intestines?

  8. Arthur Lam Says:

    I have been diagnosed with systemic scleroderma by Dr. Chung 10 years ago. I have been receiving alternative medication and treatment. I have stop coughing tremendously, no more oesophagus dysfunction, raynauds.

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