Discussions By Condition: Rare Disases

Kearns-Sayre syndrome

Posted In: Rare Disases 8 Replies
  • Posted By: Anonymous
  • March 18, 2006
  • 11:19 PM

I have a family member with Kearns Sayre and would love to talk to others who are diagnosed with this illness.

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8 Replies:

  • will try to answer your questions.
    Anonymous 42789 Replies Flag this Response
  • I was just diagnosed three days ago with Kearns Sayer Syndrome and would like to hear from others with this rare disease about anything they might no or therapies that haven't been started on me yet. My neurologist has to contact some other doctors at research centers in order to learn more about it. If anybody out there that can help, I'd greatly appreciate it. smt1778
    Anonymous 42789 Replies Flag this Response
  • check out these two websites, they should be a good springboard for you to start researching your disease.www.genetests.orgwww.orpha.net
    Anonymous 42789 Replies
    • October 23, 2006
    • 03:09 PM
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  • I was just diagnosed three days ago with Kearns Sayer Syndrome and would like to hear from others with this rare disease about anything they might no or therapies that haven't been started on me yet. My neurologist has to contact some other doctors at research centers in order to learn more about it. If anybody out there that can help, I'd greatly appreciate it. smt1778hi so sorry to hear that you have kss(kearns sayre syndrome) i have a family member with the same and have contact with others if you need some info please get in touch
    Anonymous 42789 Replies
    • December 22, 2006
    • 03:38 PM
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  • Hi, it is thought that I have Kearns Sayre Syndrome. I'm 32 and I would love to talk with anyone else that has this problem. You may email me at: dej92@hotmail.com Thanks.Dawn
    Anonymous 42789 Replies
    • September 27, 2007
    • 05:19 PM
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  • It is thought i have kearns sayre to, i will find out shortly. If you want to talk you can email me at: dej92@hotmail.com Dawn
    Anonymous 42789 Replies
    • September 27, 2007
    • 05:26 PM
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  • My aunt has KSS and has been suffering with this for over 30 years. She became a diabetic as a teen and was later diagnosed with KSS. Over the years she has gotten progressively worse. As a result of KSS, she has complete loss of hearing, sight and has also suffers from irregular heart beats which resulted in the need for a pacemaker. We've noticed that her muscles have become very weak and every month or so she has these "episodes" I don't know how else to explain them where she becomes almost paralysed....she can't speak, she begins to smack her lips a lot, she becomes complete dead weight. They occur sporadically and if she happens to be walking she fall straight back or if she's sitting she'll begin to slide off the chair. This is extremely frightening...many times we've called 911 because we think she's having a stroke. Her doctors haven't done much and we're pretty much at a loss. Anyone experience anything similar?
    Anonymous 42789 Replies
    • October 15, 2007
    • 06:09 PM
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  • Hi I have a son who has Kss he has had eye lid surgery he is now 21 5'8" and weighs 120lbs .There is a Doctor in Maryland who has worked with one other person and she is in washington DC. I am trying to find out if others suffer from Migraine like he does
    Anonymous 42789 Replies
    • October 27, 2007
    • 02:04 PM
    • 0
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