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As far as I know friedreich's ataxia is a progressive disease with no treatment. Therefore, friedreich's ataxia must be fatal. Is this the case? Can anyone tell me more about the life expectancy of friedreich's ataxia patients? What is the prognosis? How do symptoms progress? Thank you for your information.

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Sadly, yes, it is the case. Patients with this disease typically have a life expectancy of 35 - 50 years.
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Hello paulo,

as you said yourself, Friedreich's ataxia is inherited and progressive condition which, unfortunately, has no approved treatment, so life expectancy for the ones expected is estimated at a maximum of 50 years. This disease affects mainly the nervous system and causes irreversible damage to its main parts, mainly the spine and nerves outside the brain.

It also is known to cause diabetes and heart disease, which makes it even harder to deal with progressive neurological damages that cause speech problems, visual or hearing impairment, even progressive weakens in muscles of the arms and legs. Friedrich's ataxia also causes spine curvature which might require further surgeries.
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Paulo,
Friedreich's Ataxia (FA) is a degenerative double recessive genetic defect. They sometimes say that your repeat link number (frequency of the defect on the gene) is indicative of how quickly the disease will progress. A high repeat link number means a briefer life expectancy. From what I have read and observed, the average life expectancy is 39. I did meet one person with FA who was in his 50's. FA affects the long nerve cells, which controls your heart, so usually FA people succomb to cardiac arrest. You should investigate using Idebenone if you have FA.
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My Mother in law has this, she is 62. Although she is wobbly, she leads a relatively normal life. She walks with a stick although she cannot walk very far and uses a mobility scooter. She lives alone and is fiercly independent. She has mild diabetes.She has had 3 falls this year, which have resulted in a broken ankle, bruised ribs and a cut to her head. Despite this, she remains independent and long may she continue to do so.  However i have noticed she is becoming slightly incontinent, I do hope this is a blip and not another factor for her to deal with.  I hope this is a positive report on Friedrichs Ataxia and that it gives others hope.  I felt quite depressed when i tried to find out more about this disease as I havent seen anyone else with a good life expectancy.  I feel quite positive that she will be with us for many more years!

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My nephew has had FA since about 8 or 9 yrs of age. He is now 47. He has been in a wheelchair all of his teen years and to date. He is very independent. Does alot for himself.

He does live with his mother who does much for him though. He has slowly developed problems with his eyesight and is now pretty much blind. Can see differences in light and shadows.

 

He is remarkable and make all the family so proud of him. He has gone sky diving, scuba diving. Goes on vacations with friends out of the country.

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I was just diagnosed and am 77. I may outlive your predictions.
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It depends on the severity and time of onset. I am 77 and noticed it 2 years ago. Diet and exercise. I elminated ALL grains, GMO, and gluten (no gluten-free packaged products, which are NOT gluten-free, diary, alcohol, spices, caffeine, and sugar and am doing ok. When I go off this diet and don't eat a lot of kale and small amounts of organic, grass-fed beef, chicken and eggs for protein, I am worse.

My cookbook-memoir about to be published has lots of research about the diet issue:Tales of A Gluten-Free Gypsy
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I did clinical trials with idebenone several times and it was discovered to be not as useful as hoped.
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i was also recently diagnosed with FA. it was a big thing to deal with because im a 28 year old. It finally hit me when i tried to do a jumping jack but couldn't. b/c when i was younger it was no big thing and super easy. but apart from the clumsiness i've just been lviing my life the same way.

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My aunt recently passed away at the age of 67. Her first symptoms started at the age of 16 and was using a walking at 18 and a wheelchair shortly after that. She was told she wouldn't live to be 30.
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I meant this lady on Facebook 4 years ago, she was about 34 and yesterday she died. Her family told me she had Frederick Ataxia..i was just wondering if she was in alot of pain. Can anyone tell me. 

 

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I am a care giver to someone who has this disease and is 55.
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thank you for that and I am sorry about your loss. My sister whom is 45 was diagnosed in high school is it is very bad now she cant swallow food without choking on it and it breaks my heart. She is in high spirits though and is head of it at fsu boosters make great money and has a great life but I would give anything for her to have a normal life. Did your aunt do any of the trials they have offered? and what was the initial cause of death?
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I'm really glad to hear that , I was diagnosed at 25 after I'd had my second child it's not in the family and I've never meet any one with it I'm now 33 but every thing I've read seem to think I'll be dead by 40 scary .
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