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HELP I need a doctor

scleroderma specialists

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#1 grafxdiva



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Posted 27 August 2012 - 08:52 AM

Hi everyone! I am a 42 year old female who was diagnosed 12 years ago with Scleroderma. I am seeing significant changes (for the worse) and am looking for a new specialist. I live in Florida and am having a horrific time finding a doctor that is even somewhat versed in Scleroderma! I was wondering if anyone can suggest a doctor or Scleroderma center anywhere in the US. I am also curious to know what other sclero patients are doing, meds or therapy, to help slow down the illness. Please help me!

#2 Shelley Ensz

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Posted 27 August 2012 - 10:06 AM

Hi Grafxdiva,

Welcome to Sclero Forums! We have a section on our main site of ISN Guide to Scleroderma Experts, and we are adding more listings all the time. Treatments vary a lot depending on types of scleroderma, symptoms, and stage of the illness; there is not a one-size-fits-all answer to treating scleroderma.

So your treatment plan will probably depend greatly on what symptoms you have that are most bothersome right now, and the best approach is to seek out an expert, just as you are doing now. They will let you know what treatments (if any) are best for your particular type of scleroderma, symptoms, and stage of illness. You can also look up your symptoms on our main site, and track down treatments. See: Symptoms of Systemic Scleroderma.

Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf


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Posted 27 August 2012 - 12:35 PM

Hi Grafxdiva,

Welcome to these forums!

I'm sorry to hear that your Scleroderma symptoms are deteriorating; it must be very worrying for you.

Shelley has given you the link to our ISN Guide to Scleroderma Experts page, which I hope you'll find informative and helpful. As you have probably surmised, it's very important, if possible, to be treated by a Scleroderma specialist as sadly many rheumatologists do not have the knowledge or expertise to deal with this complex and unusual disease.

Certainly now that you've joined our community, you will find lots of help and support here. Do please keep posting and let us know if you are able to consult a Scleroderma expert and if so, how you get on with your appointment.

Kind regards,

Jo Frowde
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#4 Amanda Thorpe

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Posted 27 August 2012 - 03:17 PM

Hello Grafxdiva

Welcome to the forums and I am sure you'll find a scleroderma expert from the information given by Shelley. Having an expert is the best thing you can do, as scleroderma is such a tricky disease.

It affects everyone so differently, some people have it mildly and others, like myself, severely. Treatment is based on symptoms and they vary with everyone. It cannot be cured but the symptoms can be treated and you can be made more comfortable.

Let us know how you get on and keep posting.

Take care.
Amanda Thorpe
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#5 Sweet


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Posted 07 September 2012 - 09:36 PM

Hello, and a warm welcome from me as well. I'm sorry to hear you have worsening symptoms, and find yourself needing a new provider. I do hope that you can find one to your satisfaction from the list that Shelley has provided for you.

Again, welcome to the forums!!!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)