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Which forum member or loved one living with FA has late-onset?
A late-onset diagnosis in Friedreich’s Ataxia (LOFA) is a less common form of FA that presents after childhood (age 5-15). This could mean that somebody was diagnosed after they were in their 20s.
It has been shown that symptoms and slower progression compared to the typical early-onset form can take place in those who are LOFA.
If this pertains to you or your loved one, what age were you diagnosed, and how old are you now? What have your experiences been like?
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4 Replies
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Christina,
I was finally diagnosed was I was around 30 years old. Looking back the symptoms were there at a younger age but not severe or easily noticeable. Since then it has progressed from walking aids/crutches, walkers to a wheel chair. The hardest part is coping or dealing with things that use to be done easily that now require assistance or aid.
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Hi Jeff!
Your story sounds similar to mine. I was diagnosed at 21 years old, but started noticing symptoms when I was younger growing up. I am also in the process of finding which mobility aid works best for me (scooter vs. walker), so I understand!
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Hi Christina,
I believe I have late onset FA, but I had scoliosis at 12. The consensus was it was “idiopathic” I had a spinal fusion and body cast but I did everything I wanted to after that. I was always uncoordinated so I never played sports or anything. Then when I was 40 I got high blood pressure and got on meds. My Drs did tests and said, “we don’t know why you have this”. Then when I was about 44, I got heart palpitations and they upped my BP meds and that worked. Then a year or 2 later I had some non-injury falls and had to “think” and kind of froze up when getting off my bicycle, also sometimes when I drank water, I held it in my mouth (delayed swallow). Then over the next 2 years I had trouble walking and going up steps without railings. Finally when I was 48 I knew I was getting worse so I went to a neurologist, who confirmed ataxia. I had to stop working. I got a textbook and through process of elimination and symptoms, diagnosed myself with FA. After about 10 years I got the genetic test to confirm FA. Now, at 61, I still use a 3 wheeled walker in the house and a 4 wheeled walker outside. I can tell I’ll need a w/c soon because I’m leaning heavily on the walker and it makes my arms and neck sore. Also I take lots of sitting breaks during the day and do very little physically after 6 or 7 PM. I miss doing what I used to be able to do but I’m grateful I got to do the things I wanted. Still it’s always a struggle to adapt and have to modify activities but I think I’m okay with it.
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Hi Cathy!
Thank you for sharing your story! I also had scoliosis growing up, so I know that you don’t think of FA as something to associate it with since you think it maybe a natural part of adolescence/growing.
It is pretty impressive and brave that you advocated for yourself like you did and got a confirmed diagnosis after living years of having symptoms.
I know it’s tough, but I am glad you are able to focus on what you can still do!
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