Kearns-Sayre Syndrome

Roslyn's rare disease day story
Hi my name is Roslyn. I am 40 and I have Kearns-Sayre Syndrome. I have three beautiful girls and a new granddaughter. I had just beaten breast cancer to find out I had KSS.

I haven’t found anyone in Australia with this as yet. I have found two other people with the same condition, one in the US and one in the UK. I would love to find more people with KSS to keep contact with for support.

What is your story? Share with us your stories and help to build a community to assist those affected by rare diseases to feel less isolated.. Thank you!



  1. A Kearns Sayre Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Kearns Sayre Syndrome. You’re not alone. 20 People. This is the link:

  2. Hi – I have a 48 year old brother in Bunbury WA with KSS. He was diagnosed when he was about 16 and is now quite significantly affected. The AMDF website is really helpful.

  3. good evening

    my friend have also the kearns sayre synrome. how do you manage it

    how you feel?

  4. Hey my name is Emilee I live in Texas US. Go on facebook and search kss or kearns sayres syndrome theres a group her name is becky yu she runs the page. COME Join for support 🙂

  5. Hi, My daughter is diagnosed with KSS when she was two years old. She is now ten years old and I also seek more information on KSS.