Friedreich's ataxia education: Empowering yourself

It can take years of dealing with the unknown until a Friedreich's ataxia diagnosis is confirmed through genetic testing. Here are four people's stories on their journey through the diagnostic process and how it felt to finally put a name to symptoms that had plagued them throughout their lives.

Being a teenager is hard. But growing up with a progressive disease like Friedreich's ataxia can make it all the more challenging. Three people with FA describe what it was like to grow up with the disease, from diagnosis to acceptance to being able to pass on everything they learned to other children with FA.

Elizabeth Hamilton, whose daughter Amelia lives with Friedreich's ataxia, discusses how she approached talking to Amelia about the disease, how having a community to rally around them has helped, and advice she has for other parents in a similar situation.

Several mobility aids and other adaptations are available for people with Friedreich's ataxia to make daily life easier at home, school, and work. As FA progresses, patients may need to rely on a variety of assistive devices that can help them maintain their mobility and independence.

Being the parent of a child with a rare disease like Friedreich’s ataxia means balancing healthcare appointments, working through the challenges of a progressive disease, staying strong for your child, and so much more. It's easy to get overwhelmed, but there is a community and resources that can help.

Various treatments are available that can help slow the progression of Friedreich's ataxia and manage the disease's symptoms. In addition, physical and occupational therapies can help patients with motor function, and speech therapy can assist them with chewing, swallowing, and speaking.