Sadly My Mum Just Died Of Melas

My mum was first diagnosed at the age of 54 after having her first stroke like symptom. She had had diabetes and had started to lose her hearing around the age of 30. she conintued to have increased stroke symptoms but without major episodes as such. Sadly at the age of 58 after gradually losing her mobility she had a period of illness in which her kidneys failed she passed away very suddenly. I would love to hear from others who have had experience with MELAS or cared for someone with MELAS, or someone like me are dealing with the possibility of inheriting MELAS and the implications of having children. Please feel free to email me at I am happy to share experiences.
loubR loubR
4 Responses Jul 13, 2010

I am so sorry to hear that - I have an extremely similar story to share... My Mum also started losing her hearing around the age of 30 and most probably had had diabetes - although that was never diagnosed. She had her first stroke-like episode at the age of 48 after which she had to have reading lessons. Then nothing happened for another 5 years. And then year after year she had been admitted to hospitals with further stroke-like episodes. And she passed in 2009 at the age of 55 after heart failure. I can't believe how similar your story is to mine. I have increasing difficulty living with the fact that I might be a ticking time bomb; and as much as I would like to have children of my own - it seems like a very unreasonable thing to do...

My husband was diagnosed at 48, it was after his third stroke. What should I expect? I think each case is unique, but was wondering. Btw, he has had 4 major strokes and 3 minor. I need another spouse going through it......with a positive attitude!

Hello I am a spouse and my husband has Melas. We have known it for years and have been able to put it aside through the years. It changed our way of living instead of waiting with our dreams we have lived our dreams every year by travelling and going somewhere. He is still working but his hearing is getting way worse and he has lost a lot of his vision. It has taken it's toll to change our everyday life to cope with the bad vision BUT we have managed really well and he can still see about 30% on one eye and 10% on one eye. He was diagnosed 19 years ago.
I would love to hear from you.

I have melas and it's like war inside me, body blows thru me to my brain out my ears,
a blast at rest. I get get jerks at night. I probably felt 100's of different kinds of pain.
My arms, eye lids, inside nose hurts. It's so much pain and wish there was a pill for
us, I pray almost by the minute.
I wish Jesus would come save us from all pain were going though.

I am sorry to hear about youre Mam. My nephew was diagnosed with melas syndrome 9 yrs ago. He is 26 now and suffering day by day. There seems to be no cure. My sister is going out of her mind with worry. We are delighted to have found this post as not many people know about this disease and it seems to be more common now than before. TK