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Rare Disease Day is coming up!
This month, we will be discussing rare disease topics as we get ready to celebrate Rare Disease Day on February 28.
I clearly remember the day I first heard the words “Friedreich’s ataxia”. My son, Noah, and I were sitting in a pediatric neurologist’s office after years of trying to figure out his individual symptoms.
I googled it as we were waiting for Noah to have lab work drawn, and what I saw honestly scared me so badly.
As the months went on, and we learned more by getting involved in a clinical trial and meeting FA families, I still had (and have) my moments of fear, but also, I have moments of hope mingled in.
What was your initial reaction to hearing your or your loved one’s diagnosis?
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2 Replies
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My family and I were initially confused, scared and frustrated that this was happening. We knew getting involved and meeting other families going through the same thing would help, so we did that right away.
When my brother was diagnosed a few years after me, we felt more prepared having all the right tools, resources and connections.
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Thanks for sharing! It is so scary but community has made all the difference for us as well.
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