The more you know about Friedreich’s ataxia (FA), the better you’ll be able to manage it
After being diagnosed with FA, you probably have lots of questions. You may even feel overwhelmed as you learn about the condition. Be sure to talk with your doctor about any questions you may have.
It’s important to remember that you won’t learn everything about FA overnight. But this is a good place to start and you’ll learn more over time. The more you understand, the better you’ll be able to manage your condition and be an active member of your care team.
Putting together a strong multidisciplinary care team is an important part of managing FA
Because FA is such a rare disease, it may be hard to find people who understand what you are going through. People who can support you include:
Various healthcare professionals. Each member of your care team focuses on different FA symptoms. Download the Care Circle Flashcard to learn more about each member of your care team.
Your family and friends. Surrounding yourself with a support system is critical throughout your FA journey. If you’re not sure how to talk to your friends about FA, download the Let’s Talk FA Brochure for tips.
Other FA warriors like you. Sharing your experiences with other FA warriors can help you find the support you need. Visit the FARA website for a list of support groups. You can also join the Friedreich’s Ataxia Parents’ Group, an online group where people with FA and their caregivers share information and support about FA. You can also find several FA support groups and news pages on Facebook.
Healthy eating and physical activity are important, too
By maintaining a balanced diet and being as active as you can be, you’re taking big steps in managing your FA:
- Exercise can help you feel better, and even improve strength and reduce fatigue. Keep in mind, everyone’s physical ability is different. Talk to your doctor and/or physical therapist about which exercises are best for you
- Maintaining a healthy, balanced diet is important for people with FA. Making the right food choices can help you better manage FA. Always talk to your doctor or nutritionist about any changes to your diet
To learn more about managing FA, download the Managing FA Brochure.
Learn more about the healthcare professionals who may be a part of your care team.
Listen to people living with FA talk about their experiences.
Find out about FA advocacy and support groups.
