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Hello Friends,

I am coming back after almost 2 years


I have chosen to open a new topic as this is pretty broad topic instead of earlier on Bowel Incontinence.


Scleroderma is such a complex autoimmune disease that nothing surprises me.


I am dealing with this disease for last 18 years and was officially diagnosed 12 years ago.


I have been very fortunate to have competent doctors in San Francisco Bay area and supported by University of California at San Francisco or UCSF which is a premium healthcare intuition.


In my opinion, Scleroderma impacts a person at least three ways:

  • External damage: skin, fingers, etc. This is most common impacts on scleroderma survivors.
  • Internal damage: This is a complex form of scleroderma to diagnose and treat, according to my Rheumatologists locally as well as at UCSF, there is very little can be done for this. The organs impacted: lungs, stomach, liver, pancreas, intestine, bladder, etc. where organs lose flexibility. Some of the example I have gone through: Severe lung damage, acid reflux, poor digestion, weight loss, Fecal and Urine incontinence,
  • Neuron damage. There can be significant Neuropathy damage which can cause severe pain, dizziness, drowsiness, as well as impacts on many areas described in item 2. Brain fails communicate with the organ/nerves in the area and organ malfunction occurs such as Neuropathy pain, fecal incontinence, depression etc


I am sure there are many smarter experts there in the group.

Kind regards,





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Hi Kamlesh,


Thanks so much for posting.


Scleroderma is indeed a very complex and difficult disease to diagnose and deal with, not least because it affects everyone differently and the symptoms are many and varied.


I'm glad that you've had the benefit of a competent medical team, which certainly is a bonus; I was very fortunate to be treated in a top lung hospital, which I know has made all the difference to my prognosis.


This is why we do advise our members to consult a listed scleroderma expert, even if it requires a fair amount of travelling, as it is very important to receive advice and treatment  from a specialist who understands all the little idiosyncrasies of the disease. 


Kind regards,

Jo Frowde

ISN Board Member

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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