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?