How To Live With Kearns

Hi my names Shaz I have a twenty year old son who was diagnosed with kearns about twelve year now don't really know an awful lot about this condition except its the most heart breaking condition joining I'm my eyes my son dose not know the full extent of this condition he would never under stand it and all he wold do would be worry himself sic thinking about it all I'm his mum so take tat bit of worry away from him . Connor is as active as he can possibly be he no longer walks on his own but with a buddy to steady himself he refuses to use a chair or walking sticks lol he is very stubborn young man he's of very slight build standing at 4.4 ft and weighing in at 4and a half stone ): everybody were we live are fantastic with Connor and help as much as possible I could not have coped with out my family ,friends and mbers of my community . I look forward to connecting with every one on here (; x
Shazgreet Shazgreet
18-21, F
2 Responses Dec 15, 2012

Hi Shazgreet,

Whereabouts are you? I'm Rowland, in south west UK.

I'm 48. I had soft signs of KSS as a teenager, left eye ptosis, and was quite thin. My symptoms didn't really hit until my mid 20s, eyes got worse, stopped moving, double vision, dryness.

In my late 30s arms and legs became weaker and I became more easily fatigued. Gastric reflux.

I got a diagnosis in 1999 aged 35 after seeing a neurologist who took a muscle biopsy. He knew what it was but didn't know anything about it. Left me to it. In 2000 ish I started finding folk on the web who directed me to specialists in the UK, finally got to Newcastle in 2001 who confirmed the diagnosis.

In 2010 heart issues began. This was always the prognosis of KSS but I had not experienced symptoms. I now have a pacemaker to counter heart block and am on antiarryhthmic medicines for the atrial fibrillation/flutter.

I started using a cane to assist me at the beginning of 2012. I wish I had sooner.

There is a small community of us with KSS and or CPEO on Facebook. Some of us chat occasionally in a chat room at and/or via Skype.

I'm glad you reached out, sorry you have to. I hope responses here might be of help. You and your son are not alone.

Heart breaking fustrating sad happy ups alot off downs.thinking off conor and u.need alot off love from famly.not much help wife has kss 27 years now dreadfull I hate it.just takes every little bit off energy out off her.never lets u alone paul husband 07876617880 anytime to chat 27 years expereince.

My wife was 4to5 stone at one time now 9 stone witch is good.alot off the medicines and tablet for kss not much good I think doctors and specillased dont know.your left on ur own 4 sure.were r u.mitolinks might in ireland north.hope things improve.