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

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.

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