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janey

Scleroderma often left undiagnosed

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Scleroderma often left undiagnosed.

 

Research conducted by the Irish Raynaud’s and Scleroderma Society found that the average time between diagnosis of Raynaud's and scleroderma is 6.7 years. In most cases, these diagnoses were made by rheumatologists, however there is an extreme shortage of consultant rheumatologists in Ireland, which can make diagnosis even more difficult. Deborah Condon. Irish Times. 04/07/10. (Also see: Difficult Diagnosis)

 

This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I think we should have an hour of silence to meditate on this article. Can you imagine, as a group, we are undergoing an average of 6.7 years undiagnosed, when dealing with an illness that can have serious (and even fatal) complications develop within the first three years?

 

Of course this was only a study for Ireland but it also jibes with other research out of Canada, and I strongly suspect that it is even worse in many other parts of the world.


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.

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Hi Everyone,

 

I can't begin to imagine Gareth going 6.7 years before being diagnosed and put on Plaquenil. Thankfully, he was put on it within 9 months. To picture him having many years of esophageal dysmotility, chronic weight loss, no voice, restrictive lung issues/pain, esophageal spasms, fatigue............. blast, I'd go nuts for him!!!

 

Take care, Everyone.

Margaret

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If I hadn't had major skin involvement I am sure I would have gone years without a diagnosis because of the lack of markers in my blood work. As it is I am described as having atypical sclero because of the way it evolved so I hate to think how I would have ended up if I had not been seen by knowledgeable rheumatologists.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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