It must be my day for questions
Thanking you in advance for reading and for answering if you can
One of my very best friends has a form of muscular dystrophy - specifically -Kearns-Sayre syndrome
I have researched a fair bit on this - know its signs symptoms etc and the generalised expectations- have been to a number of the world wide sites
My friend is in her middle 50's and currently trying to cope with her ageing parents who are both in poor health -- totally another story
My Question is have any of you cared for any one who has had this specific syndrom and what were your experiences - l would like to be able to know a little more especially about the long term and the possible expectations- if you know what l mean
Thanks Tookie
Aug 2, '02
Try this web site:
National Organization for Rare Diseases:
http://www.rarediseases.org/
They will likely refer you to the Muscular Dystrophy Association web site, too.
Aug 2, '02
Thanks Molly J - Its a new site l hadnt been to before - have been to a number of the muscular dystrophy sites -
would like to have experinces of anyone caring for this particular syndrom - if they have ever cared for them etc.
Tookie
Aug 2, '02Occupation: school nurse Specialty: 36 year(s) of experience ; Joined: Jun '99; Posts: 748; Likes: 68Try this web site:
Aug 2, '02Occupation: Education Coordinator Joined: Dec '01; Posts: 1,192; Likes: 16Thanks Molly J - Its a new site l hadnt been to before - have been to a number of the muscular dystrophy sites -
