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    • #11262

      How old were you when you were diagnosed? How did you handle it at that time?

    • #11707
      Natalieprice
      Participant

      My son was 7 when he was diagnosed with FA . He was diagnosed at 5 with scoliosis. And also 7 with cardiomyopathy x

    • #11719
      mercedes
      Participant

      My daughter started with scoliosis at 10 and was diagnosed 1 month before turning 13. She had scooiosis surgery at 13 and her heart is still good. She vill be 15 in two weeks.

    • #11883
      Fenna Paulus
      Participant

      I was eleven when I found out. I really didn’t know what it was back then. But in the years after that I started realising what AF is and what it does to me. That led me to depression, feeling very down. Now, four years later, I know what it is and what it does to me. I handle it better now than I did before but it is still very sad

      • #11885
        Matt Lafleur
        Keymaster

        Well I am glad you are here Fenna, because we can all relate to that. I hope you can find some encouragement here. Know that you are not alone!

      • #12035

        Fenna, I think this is common among those of us with FA so I know what you mean! I don’t think the sadness will ever fully go away but I think they’re ways to deal with those emotions. Find whatever works for you.

    • #11990
      S.Rishi Kumar
      Participant

      I have an interesting story about that . I was diagnosed when I was 14 years old and now I am 19 . The interesting thing is that I didn’t know about FA officially until I was 18 . For some reason my parents and doctors thought it’ll be better if I don’t know about it ‘untill I reach a mature age’ . Surprisingly it worked out ! It didn’t take me long to figure it out on my own . Thanks to the use of term FA by doctors and GOOGLE ! Since then I slowly began learning about it on my own without sharing anything even with my close friends . At first it was very confusing and depressing especially when the symptoms became apparent . But the immense trust that I had in my parents got me through very quickly and I accepted the facts . One day I met a psychologist when I was 18 so that he could ‘break the truth’ , but before he said anything I told him the full story and everyone were surprised . I even remember the moment when my father was being very nervous which wasn’t his style at all and my mom feeling relieved knowing that her son can take care of himself pretty well . I believe that leaning about this myself boosted my inner strength greatly and I doubt that if I was briefed from the beginning I would’ve accepted it this quickly .

    • #13065
      Amber
      Participant

      My daughter was 9 when the OFFICIAL diagnosis was made of FA, she will be 11 in December. However, my husband and I knew from the age of 2 something wasn’t quite right with her gross motor skills. She was #5 of our 6 children. She had been slightly delayed with learning to crawl, pull up to stand, and learning to walk. Her pediatrician assured us that “all children are different and she is just taking her time learning,” Or, “All toddlers fall, she’s just clumsy.” As time went on, she continued to struggle with walking and fell VERY frequently. About the time she was 4-5 and in school is when we REALLY noticed something WAS not right. Her school contacted us with their concerns that she was not able to do things, physically, that other children her age could and she tired more easily. We changed pediatricians and started over. Her road to diagnosis has been very long. The hardest appointment was when we met with the genetic counselor and really sat down and explained what it is that she has. FA is still confusing to her. She has questions everyday. She has good days and bad, emotionally. Currently, she is still able to walk with some assistance, has cardiac problems, and tires easily. She is a very brilliant girl with an enormous heart, loves school, ANY type of animal, she was recently asked to join the mental math team at her elementary school (first competition next month :)). She is JUST like any other girl her age, she just so happens to also have FA. Right now we just take things one day at a time, and tackle each obstacle as they come.

    • #13084
      Gregor Morgan
      Participant

      yeah i was diagnosed in december of 2018. i was 17 at the time. ive been showing symptoms since i was like 13 so it wasnt such a huge shock to me personally. but i think its been really affecting the people i talk to everyday

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