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Pompe disease - does anyone with pompes have pain in thier fingers, also fingers locking up?

Responses (2)

LaurieShay 31 Jul 2011

Hey dindin,

I wasn't familair with this genetic disorder until I just read about it. I found the following site which offers a toll free number to call for asking questions of trained professionals on this disorder. You can find the numbers at:

http://www.pompe.com/en/healthcare-professionals/support-services.aspx

Scroll down and it explains support services for the patient and the numbers to call. This site also explains alot about the disease. You can click on the different pages using the links on the left hand side of the above page.

Best wishes,

Laurie

jkremke 23 Aug 2011

i was diagnosed recently with pompe and yes i have trouble with my hands as well , cramping and my fingers are hard to move at times ... i wish there was a support group where people with pompe could contact each other regularily

Anonymous 23 Aug 2011

Their is a group for this disease. Click on Pompe disease in the above question in blue & it takes you right there. I believe WebMD also ave a forum on this. Might check it out...

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