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Scleroderma Doctor Guide

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#1 quicksilvermom



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Posted 23 June 2010 - 03:19 PM

Hi All,

I am wondering about the main page recommendation of doctors listed.

Has anyone used them, and because they are listed are they the best of the best? We are about to take our son to see the doctor from the list here, from Jefferson hospital in Philadelphia but before we continue just wanted to make sure we are going to the right one. It is so hard to find a really good doctor.

Thank you for any input.


#2 Shelley Ensz

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Posted 24 June 2010 - 02:37 AM

Hi Kelly,

I think I may have missed welcoming you to Sclero Forums. I'm sorry your son has scleroderma and send my best wishes to both of you.

The doctors listed in our Scleroderma Experts page, and particularly on the SCTC Listing that you see there, are all members of the nonprofit Scleroderma Clinical Trials Consortium (SCTC). This group conducts stellar peer-reviewed international research for scleroderma and related topics. It is led and comprised of world scleroderma experts, but as in any field you will find a few really major centers among them.

Scleroderma is quite rare, so there are only a few dozen scleroderma centers in the U.S. If your son is underage, beware that many of the scleroderma centers are not set up to handle juveniles; only a few of them have pediatric rheumatologists who specialize in scleroderma. So be sure to read our section on juvenile scleroderma and to contact the centers you are interested in to see if they accept juveniles and if so, to make sure they have significant experience in the particular subset of scleroderma that your son has.

Most children havelocalized scleroderma (morphea or linear) which is entirely different from systemic scleroderma (which affects primarily adults), so asking questions ahead of time will make sure you get the best specialist for his condition.

Here are some warm hugs for you. :emoticon-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#3 Jeannie McClelland

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Posted 24 June 2010 - 03:50 AM

Hi Kelly,

I use one of the doctors from the list and a friend uses another. I wouldn't be worried about taking your son to see one of the specialists at Jefferson. The University, the Hospitals, and the doctors consistently get top marks. Additionally, they recently got a very large grant from the government to study autoimmune diseases and develop a bigger center of excellence and that's always a good sign.

I know this is not your question, but I also think you might enjoy Philadelphia as a 'tourist destination.' Within walking/easy public transportation distance of Jefferson there is the historic City Hall area, Betsy Ross's House, the (Benjamin) Franklin Center (my kids loved that), the Liberty Bell, gardens, parks, and zoos. At 11th and Walnut there is a great Greek bakery where you can get some really yummy treats for a street picnic. At least I hope it is still there! I did my best to keep it in business. :lol:
Jeannie McClelland
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#4 Amanda Thorpe

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Posted 26 June 2010 - 09:02 AM

I'm in the UK and my sclero expert's on the list!
Amanda Thorpe
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#5 Eos


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Posted 26 June 2010 - 04:15 PM

I'm seeing Dr. Medsger at UPMC. He is great!