“Should I tell my young child that he/she was diagnosed with Friedreich’s ataxia?”
Though solemn and heartbreaking, that question is not uncommon. At least three times a year, it’s asked in FA forums and online groups, and debate follows. It reminds me of my own childhood diagnosis of Friedreich’s ataxia (FA).
Frankly, I would answer “Yes!” to that question every time. Obviously, finding out you have a debilitating disorder with no treatments or cure is devastating, especially at a young age. But I believe that being honest and forthcoming about this medical reality is far better than the alternative: forcing a child to live in temporary ignorance of a diagnosis.
Read more at: https://friedreichsataxianews.com/columns/should-trigger-warnings-be-used-fa/
