Dealing with a progressive neurodegenerative disease like Friedreich’s ataxia (FA) is difficult, but, whether you are a patient or caregiver, the more you know, the better equipped you will be to handle the challenges that come with an FA diagnosis.
Some ways to address the impact FA might have on your emotional well-being include getting professional assistance from mental health counselors, building a robust support network of family and friends, and practicing self-care.
Connecting to the Friedreich's ataxia community can help you gain insights into the disease, find emotional support, and give you practical advice and strategies for daily living, ensuring you’re not alone in your health journey.
Hot topics of the Nov. 1 webinar included the challenges of living with Friedreich's ataxia, strategies for success, and the recent "game-changing" therapy approval. Read more about the highlights here.
Managing Friedreich's ataxia on a regular basis means developing strategies to help you with your daily tasks and routines, balancing healthcare visits with physical and occupational therapy appointments, maintaining your mental wellness, and addressing your needs for emotional support and social connections.
Physical therapy may prolong motor function capacity (including the ability to walk) and help achieve a higher quality of life for as long as possible in people with Friedreich's ataxia. It can also help reduce pain, abnormalities of the feet and other body areas, and disability.
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.
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