Friedreich’s Ataxia News Forums Forums Parents and Caregivers “Finding a New Doctor”

  • “Finding a New Doctor”

    Posted by katie-griffith on July 28, 2022 at 10:00 am

    Finding the right doctor can be a daunting task. When you throw a neuromuscular disease like Friedreich’s ataxia in the mix, it becomes even more challenging. 

    There are many different reasons for having to find a new doctor — relocating, aging out, being unhappy. My son turned 21 this year, and we are having to find a new cardiologist since he can no longer be seen by the pediatric one.

    How do you go about finding a new doctor for your loved one? What factors affect your decision?

    christina-cordaro replied 1 year, 6 months ago 3 Members · 7 Replies
  • 7 Replies
  • christina-roberts

    Member
    July 28, 2022 at 5:25 pm

    We are having many issues finding a good one too but we’re we are in Indiana not many at all that knows about Friedreich’s ataxia and the good ones that we found are like couple states away like in new York or Florida mayo clinic been very hard for us nobody knows anything

    • katie-griffith

      Member
      July 29, 2022 at 4:00 pm

      That’s so hard, Christina! Good luck ❤️

  • christina-cordaro

    Member
    July 31, 2022 at 5:11 pm

    Luckily I go to the Children’s Hospital of Philadelphia (CHOP) and their sister Hospital University of Pennsylvania (UPENN) is within the same network. They were able to reccomend an adult cardiologist that is even familiar with FA. Can Noah be referred by his current cardiologist?

    • katie-griffith

      Member
      August 1, 2022 at 12:13 pm

      Unfortunately, he didn’t have anyone to recommend :/ We have an appointment with someone in the area in September. Hope it will be a good fit!

      • christina-cordaro

        Member
        August 2, 2022 at 5:42 am

        Keeping my fingers crossed!

      • katie-griffith

        Member
        September 19, 2022 at 8:50 pm

        He had his first visit. They hadn’t gotten records from the previous cardiologist and had to set up an echocardiogram for another date.

      • christina-cordaro

        Member
        September 20, 2022 at 7:33 am

        Always something! Continuing to keep my fingers crossed!

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