Video Q&A about Scleroderma

Wed, Nov 15, 2017
3:30pm to 4:00pm CT

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Dr. Leroy Griffing talks about scleroderma.

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Mom is 98 and was diagnosed with scleroderma in her 70’s. Refused meds they told her would kill her within 6 months. She has now been diagnosed with moderate dementia. She is experiencing difficulties with keeping food down in the past couple of months. Sometimes she dribbles her food back up, sometimes she vomits it up. Sometimes, she keeps it down. She seems to sleep more these days. She is happy and smiling and doesn’t remember the vomiting episodes. We take her to Costco and other shopping which she enjoys. She has taken no meds over her lifetime and currently takes no medications. Recently her physician recommended an OTC med for heartburn. He said she would not survive any invasive gastrointestinal or other tests. We are not interested in heroics at this point. What might she take or do to reduce her discomfort as this disease progresses? What can we expect to notice as this disease progresses?

[Dad was diagnosed with chronic lymphocytic leukemia in his 70’s and was told he would be dead within 6 months – he refused the killer treatment. He lived into his 88th year without any change in his blood numbers and had a mild heart attack while raking leaves, died in hospital (due to hospital problems) – i.e., he also outlived his diagnosis. Both of them designed and built our home themselves (no help), worked on vehicles, rototillers, grew food and used pesticides common in that era. Dad was 1st Mate on Merchant Marine ships in WWII – all with concomitant exposure to petroleum products, pesticides, etc.]

Hi. After 8+ years of Raynauds, and ANA positive. I was surprised in October when I went for annual rheumatology appt for my Raynauds and was diagnosed with scleroderma limited. My only symptom, is a slight puffiness/ tightness in my two index fingers.
My pulmonary function and heart echo tests were normal.

I am a 57 year old female and searching for a job. My question, are there scleroderma contraindications for getting cosmetic Botox? I’m sure cosmetic fillers are no longer an option for me- but, wondered if Botox is still an option- at least until I find a job.

I am grappling with this diagnosis and know my body will experience many changes- inside and out- during the next years. I’m embarrassed to ask a ‘vanity’ question given the possible severity of this diagnosis. Thank you in advance for your input.

Is today’s presentation being recorded and if “yes,” will it be available to subscribers of Mayo Clinic Connect for later viewing?

Are you Mayo Clinic’s subject matter expert (SME) on Scleroderma?
• If “no,” does Mayo Clinic – Rochester have an equivalent SME on staff?
• If “yes,” does the Department of Rheumatology at Mayo Clinic – Rochester regularly consult with you for its Scleroderma-afflicted patients?

Do you know of any Mayo Clinic-sponsored Scleroderma-related research studies seeking 65+ year-old individuals with the following diagnoses?
• First diagnosed with Raynauds and Sjogrens in early 80s followed shortly thereafter with Scleroderma
• Primary Scleroderma issue is related to GI, not skin
• Symptoms: Disappearing/sporadic motility, SBS, minimal caloric intake by mouth, acid-caused nausea (relieved by temporarily by vomiting), small bowel bacterial overgrowth (relieved with antibiotics) and infrequent bowel movements
• Life-sustaining nourishment via TPN every night

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Good info! Thanks Dr Griffing

Thank you for this!

This presentation was very informative. Thank you.

Our apologies for the technical glitch in getting the video started here on Connect. The entire session was recorded however and is available to watch again any time on this page. https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

There will be a part 2 in a couple of months. See all past and upcoming Video Q&As here: https://connect.mayoclinic.org/webinars/

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