Living with Friedreich’s ataxia

Friedreich’s ataxia is a rare, genetic condition that affects the nervous system. This may lead you to experience symptoms such as difficulty walking, coordination issues, and balance issues. The symptoms of this condition often get worse over time, which is why it is especially important to take care of yourself. In this article, you’ll find some useful tips and info about what it is like to live with Friedreich’s ataxia. 1 2

If you have Friedreich’s ataxia, then there are a number of symptoms which you may experience: 1 3 2

• Difficulty with muscle coordination
• Difficulty walking and frequent falling
• Increasing weakness in the legs
• Poor balance
• Loss of position which usually starts in the arms and legs
• Loss of normal reflexes
• Slowness and slurring of speech
• High muscle tone 
• Curvature of the spine called scoliosis
• Difficulty swallowing 
• Hearing and vision loss
• Feeling tired
• Difficulty of breath or palpitations 4

These symptoms often get worse over time and they can interfere with your daily activities. With the right treatments, you can make improvements to your quality of life.

The prognosis of Friedreich’s ataxia is often not good, as there is no cure for the condition and it can cause heart disease, which is the leading cause of death for people with FA. The average life expectancy if you have less severe Friedreich’s ataxia is 60 years and older.

Although there is no cure for Friedreich’s ataxia, there are still many things which you can do to improve your situation. Here are some tips which may help you: 1 5 2 3

• Your symptoms of Friedreich’s ataxia may improve through physical therapy. Exercising regularly can help prevent your symptoms getting worse. Especially exercises which help with balance, coordination and core stability can be beneficial. You may see an improvement in your balance from trying yoga or you can also ask your healthcare provider for a suggested physical therapy regimen. 
• A lot of additional tools are available to improve your well-being. This can range from walking aids, to wheelchairs and hearing aids. 
• Talk to your healthcare provider about whether or not you may benefit from medication. An FDA-approved medication called omaveloxolone exists to treat Friedreich’s ataxia. 
• Occupational therapy can support you in maintaining your daily activities as long as possible.
• Speech therapy can help you if you experience difficulties speaking or eating. 
• Follow up on your condition with your healthcare provider and seek treatment for conditions that develop as secondary complications due to Friedreich’s ataxia progressing, if present. 
• Getting diagnosed with Friedreich’s ataxia can be challenging. Talking about it with friends, family or a therapist can help you get support when you need it. 

Getting to know your body and learning more about your condition can help you feel empowered and increase your quality of life. With the right information, support, and therapy, you can relieve your symptoms and improve your overall health. 

Take care of yourself, 

Ada