I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on April 28, 2009, 04:23:03 AM

Title: DIALYSIS AND RARE DISEASES.
Post by: kristina on April 28, 2009, 04:23:03 AM
Dialysis and rare diseases:
Apart from the Mayo-Clinic,
does  anyone know of a Hospital/Clinic world-wide
 that  specializes in medical care/assistance
 for  patients with rare diseases (MCTD/SLE)
 in end-stage kidney failure?
Thank you.





EDITED:Fixed spelling in title-kitkatz,Moderator
Title: Re: DIALYSIS AND RARE DISEASES.
Post by: RightSide on May 12, 2009, 08:34:46 PM
The U.S. News & World Report Annual Survey of Hospitals shows that the best hospitals for rheumatology are the Cleveland Clinic, the Johns Hopkins Hospital, and the Mayo Clinic.

Johns Hopkins knows all about scleroderma and myositis and Lupus and stuff like that.  I would start there or with Cleveland Clinic.
Title: Re: DIALYSIS AND RARE DISEASES.
Post by: kristina on May 13, 2009, 07:21:41 AM
Dear RightSide,
How kind of you to inform me!
My fear was that the Mayo Clinic
was my only option for MCTD/SLE
and I am very grateful to know now
two more chances and send you
my kind regards and thanks again.
Title: Re: DIALYSIS AND RARE DISEASES.
Post by: kristina on May 28, 2009, 05:28:39 AM
The U.S. News & World Report Annual Survey of Hospitals shows that the best hospitals for rheumatology are the Cleveland Clinic, the Johns Hopkins Hospital, and the Mayo Clinic.

Johns Hopkins knows all about scleroderma and myositis and Lupus and stuff like that.  I would start there or with Cleveland Clinic.

I have applied to the Clevelands Clinic and the John Hopkins Hospital but have not received an answer. The Mayo Clinic has answered, but it was negative.
I am still trying to get into contact with a rheumatologist/nephrologist/specialist Hospital/Clinic that might deal with the type of complex rare Mixed Connective Tissue Disease (MCTD) with Lupus (SLE) and other complications I suffer from to figure out if my end-stage renal failure is due to a flare-up of  MCTD-SLE and can be halted. Thank you.
If anyone knows where else I can apply and let me know I would be grateful. Thank you.