What do you wish people knew about rare disease?

[Katie Griffith]

Finding out you or your loved one has a rare disease is so overwhelming. Little by little as time goes on, you learn more about the disease and find ways to help cope. 

When I explain Friedrich’s ataxia to others, I say that it is a progressive neuromuscular disease that currently has no treatment or cure. Then I explain the ways that it specifically affects my son, such as his voice quality, his balance, and his ability to walk.

How do you describe FA to others? What do you wish people knew about living with a rare disease?

[Shannon]

Thank you for that clear description. Our son has just been diagnosed and I’ve been struggling to describe it. This helps

[Author]

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