Early intervention for late-onset FA: Why treatment matters at every age

Last updated Sept. 23, 2025, by Agata Boxe
Fact-checked by Inês Martins, PhD

 

Although most cases of Friedreich’s ataxia (FA) begin in childhood or adolescence, some people experience late-onset FA, with symptoms appearing in adulthood. These changes can be unexpected and sometimes harder for adults to recognize.

Early intervention in FA, through a personalized FA treatment plan, can improve your well-being. For that reason, the sooner symptoms are identified and care begins, the more effectively you can manage progression, maintain independence, and protect your overall health.

What you should know about late-onset Friedreich’s ataxia

Late-onset FA, also known as adult-onset FA, is generally defined as FA with symptom onset after age 25, and it often progresses more slowly than earlier-onset disease. But it can still affect your independence and quality of life.

Symptoms of late-onset FA include:

• coordination and balance problems (ataxia)
• difficulty walking
• slurred speech
• fatigue
• muscle weakness

Heart problems and scoliosis, a condition where the spine develops a sideways curve, may also develop over time.

Late-onset FA is often recognized by the presence of ataxia in adults ages 25 to 39 years, but a formal diagnosis requires a comprehensive clinical evaluation and confirmation through genetic testing for FA. This is also the case for very late-onset FA, which appears in older adults ages 40 and older.

A confirmed diagnosis can help your doctor identify an appropriate neuromuscular disease treatment and recommend a personalized FA care plan.

Why you should start treatment early

The impact of FA on mobility, speech, and other abilities can take a toll on your overall well-being. Early intervention is essential for managing these effects and slowing FA symptom progression, regardless of when symptoms begin to occur.

The benefits of early treatment in late-onset FA include:

• maintaining mobility for longer
• reducing secondary complications, such as heart issues or scoliosis
• decreasing stress and supporting mental health

Treating FA in adults can make a meaningful difference for their health, even though there is currently no cure for the disease.

Receiving early care can help you manage symptoms and improve your overall FA prognosis, empowering you to live more fully.

Treatment options as an adult with FA

A comprehensive treatment plan for FA often involves a combination of therapeutic tools, including medication, surgery to address scoliosis or foot deformities, and physical therapy.

Building a multidisciplinary team and implementing lifestyle changes is also essential for managing FA because it helps address the different symptoms of the disease.

A comprehensive care team

After confirming a late-onset FA diagnosis, your doctor may recommend building a multidisciplinary team to address your needs and symptoms as fully as possible.

Its members can include:

• a neurologist
• a cardiologist
• a physical therapist
• an occupational therapist
• a nutritionist
• a psychologist

Your care team can work together to craft a comprehensive care plan that is tailored to both your current symptoms and long-term needs.

FA treatment

FA therapy options can include:

• medications to manage FA symptoms
• cardiac care to support heart health
• physical therapy and exercise to improve strength, flexibility, and balance
• assistive devices such as mobility aids and speech therapy tools to navigate daily living
• nutritional support to build a healthy FA diet
• counseling to help manage the emotional toll of living with FA

Lifestyle modifications

Certain lifestyle modifications can complement your FA treatment plan as well.

Examples include:

• going to bed and getting up at the same time every day to improve sleep and reduce fatigue
• practicing mindfulness meditation to deal with the stress of living with FA
• scheduling regular breaks throughout the day to conserve energy
• connecting with family, friends, and allies for emotional support

Joining an FA support group, such as the Friedreich’s Ataxia News Facebook group, can provide you with a source of peer advice, emotional comfort, and camaraderie.

How to overcome barriers to diagnosis and care

Living with late-onset FA can be challenging because of potential issues getting the correct diagnosis and obstacles to receiving care.

A common challenge with late-onset FA is that it can be easily mistaken for other conditions, which may lead to a late diagnosis of FA and delayed access to treatment. Finding experts specializing in rare diseases can help you overcome diagnostic challenges and receive appropriate treatment.

FA patient support groups and organizations, such as the National Ataxia Foundation and the Friedreich’s Ataxia Research Alliance, can be good sources for finding FA experts.

You may also encounter issues related to the cost of care and insurance coverage. Financial assistance programs can offer some relief. Examples include:

• Families for Friedreich’s Ataxia
• National Organization for Rare Disorders

Finally, you can ask your doctor about available FA resources or the possibility of participating in clinical trials for FA. These can give you access to emerging treatments for FA, though they may carry risks that should be first discussed with your care team.

Treating FA as early as possible matters regardless of when symptoms become apparent. With the support of your care team and access to resources, you can manage your health and optimize your quality of life.

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Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.