Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Finding a scleroderma expert


  • Please log in to reply
6 replies to this topic

#1 Cathey

Cathey

    Newbie

  • Members
  • Pip
  • 8 posts

Posted 07 April 2013 - 09:31 PM

Hello everyone, my name is Cathey and I was wondering if anyone knows of a scleroderma expert in my area. I live in south east Oklahoma. Desperately seeking one. Any help would greatly be appreciated.



#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 07 April 2013 - 10:38 PM

Hi Cathey,

 

We do recommend that our members consult a Scleroderma expert and I've included a link for you to our page on Finding a Scleroderma specialist. It includes our ISN Guide to Scleroderma Experts and Centres which have been reviewed, rated and listed.

 

Do let me know if I can give you any more help.

 

Kind regards, 


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 Cathey

Cathey

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 8 posts

Posted 08 April 2013 - 03:51 PM

Dear Joelf,

Thanks for the list info, was disappointed that Oklahoma has nothing. Disappointed not surprised :).
If scleroderma is prevalent in the Choctaw Indian Tribe, why is there no specialist or research center here?

I would like for this to change. I am considering contacting the Choctaw Nation of Oklahoma on this issue. I would like to know where I can get a copy of the study done on Scleroderma and the Choctaw Indian? What do you think?

Sincerely,
Cathey



#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 08 April 2013 - 04:12 PM

Hi Cathey,

 

Here is the link to our info on the Choctaw Scleroderma study.

 

As it happens, there are very few scleroderma experts in the U.S., so most of us have to travel out of state for expert care. Try to look up areas where you may have relatives or friends you might be able to visit (or even stay with), or adjacent states that might not be too far to travel.  Usually the experts set it up so that most of your care can be done locally and then they only need to see you occasionally (like once a year, perhaps).

 

:emoticons-group-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.

#5 Cathey

Cathey

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 8 posts

Posted 08 April 2013 - 09:00 PM

Shelley,

 

Thank you very much for that information, greatly appreciated.



#6 HelenUK1

HelenUK1

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 09 April 2013 - 08:10 AM

Hello, I'm new! The UK also seems to have very few rheumatologists who specialise in scleroderma. I was for a few years lucky enough to have one at my local hospital. Now, as I'm ageing (57) and so experiencing more problems than hitherto, I could really do with one. Does anywhere deal with autoimmunity systemically or is it always a case of treating each facet of the condition individually?

Helen



#7 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 09 April 2013 - 01:09 PM

Hi Helen,

 

Welcome to these forums!

 

I've included a link to the list of Scleroderma specialists in the UK of which there are actually quite a few; unfortunately it will probably be necessary for you to travel quite a distance to consult one. The Royal Free Hospital in London is a centre of excellence for Scleroderma (I'm a patient there myself).

 

In my case, my lung involvement was the worse aspect and that is dealt with by a top lung hospital; however, The Royal Free oversee the treatment I receive, although I only visit them once a year nowadays.

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)