Who Treats Friedreich Ataxia? A Guide to Your Care Team

Because Friedreich ataxia (sometimes abbreviated FA or FRDA) affects multiple systems in your body, it’s important to work with a team of healthcare providers to get the best care possible. Ideally, each of your providers will have experience treating people who have Friedreich ataxia.

In this article, we’ll cover who should be on your multidisciplinary team. These healthcare providers should work together to treat complications and symptoms of Friedreich ataxia so you can stay your healthiest, keep your independence, and maintain your quality of life.

Friedreich Ataxia Centers of Excellence

The National Ataxia Foundation has listed ataxia centers of excellence. These are facilities that specialize in multidisciplinary care for people living with ataxia and their families. Ataxia centers of excellence also participate in research studies and clinical trials and offer education for families affected by different types of ataxia.

These centers exist around the world, including in many states in the United States. However, there may not be one located near you. If you do live near one, it’s a good place to get care and start building a medical team.

Members of Your Care Team

When you’re putting together a care team for Friedreich ataxia, it should include the following specialists. Some of these professionals may only need a place on your care team in certain medical situations, while others should be on any team for Friedreich ataxia.

Neurologist

A neurologist is a doctor who treats disorders of the nervous system. Friedreich ataxia can affect your nervous system in several ways. Many people find that they lose a sense of where their body is in space, while others might have problems with their muscles, hearing, vision, and bladder. All of these symptoms are connected to problems with the nervous system.

A neurologist can help you with issues related to coordination, balance, muscle function and weakness, sensory problems, muscle spasticity, and pain. Ideally, you should be evaluated by a neurologist with expertise in ataxias and other balance disorders.

At your appointments, they’ll likely run tests to see how Friedreich ataxia is affecting your body, then help you find treatment options to address those issues. Your neurologist may also give you a referral to other specialists, depending on whether you’ve developed complications of Friedreich ataxia.

Primary Care Doctor

You’ll see your primary care doctor regularly, such as when you’re due for a routine physical exam or if you’re feeling sick. Even if you have specialists to help with Friedreich ataxia, you’ll still have a primary care doctor.

Primary care doctors serve a couple of functions. They’ll be there to help if you get sick or injured and to offer advice and direction in an urgent medical situation. This doctor can also test you for conditions often associated with Friedreich ataxia, like scoliosis or diabetes, and refer you to the correct healthcare provider to help with each.

Endocrinologist

Friedreich ataxia may affect the pancreas, which helps control blood sugar. If this happens, you may develop diabetes or abnormal blood sugar levels. Your primary care doctor can teach you about diabetes and screen you for blood sugar problems. But if you’re diagnosed with diabetes, you may need to see an endocrinologist.

When you go to an endocrinologist, they’ll help you learn how to manage your blood sugar. They may recommend lifestyle changes around diet and exercise or give you medications to help.

Physical, Speech, and/or Occupational Therapist

Which type of therapist you need may depend on how Friedreich ataxia is affecting you. Some people may have separate physical, speech, and occupational therapists, while others may only have one or two.

Physical therapists focus on how your body moves to keep you safe and strong, and they can also help you to manage difficulties with balance.

Speech therapists can help if you struggle to swallow or slur your speech.

Occupational therapists help you make changes at work and at home so you can continue living the way you want to. They can also help you transition to using mobility aids when you need to.

Orthopedist

If Friedreich ataxia is affecting the shape of your spine or the bones in your feet, an orthopedist can help. These doctors help keep your bones, muscles, and joints strong and healthy. They may recommend surgical procedures or options that don’t involve surgery, depending on what’s happening in your body.

Cardiologist

Heart disease is common in people living with Friedreich ataxia. Cardiologists are doctors who specialize in the heart. They can run tests to see how your heart is doing and then recommend treatments that will help your heart stay as healthy as possible.

Ophthalmologist

Ophthalmologists are healthcare providers who specialize in diseases of the eye. They’re often on Friedreich ataxia care teams because the nervous system is involved in eye health and vision. An ophthalmologist can help test your eyes and get you the care you need for eye disorders or vision problems.

Geneticist/Genetic Counselor

A geneticist is a medical specialist who understands how inherited genes cause Friedreich ataxia and how the condition is passed on in families.

A geneticist helps people with Friedreich ataxia or their family members get tested for the genes responsible for Friedreich ataxia. They can help you weigh the pros and cons of getting tested. If you or other family members undergo testing, the genetic counselor can help you understand the results.

Mental Health Provider

People living with Friedreich ataxia may have mental health challenges. Researchers do not yet know whether these challenges are directly related to the physical effects of Friedreich ataxia on the nervous system or to the difficulties of living with the condition.

Either way, a mental health professional is the right person to help with those kinds of challenges. They can offer diagnoses and treatments throughout your lifespan and also provide support to any of your family members who may be struggling because of Friedreich ataxia.

Talk With Your Care Team

It’s important to talk openly with your care team about any changes in your condition. You can also give team members permission to speak with each other to help coordinate your care.

Stay on track with any recommended testing and let your healthcare professionals know if you develop any new symptoms or if your existing symptoms get worse. This helps you get the support you need quickly for any new developments, which can affect your overall well-being.

Finally, if your child has Friedreich ataxia and is moving from pediatric to adult care, talk with their current doctors about the next steps.

In some cases, a person making this transition may be able to stay with the same doctors. In other cases, they’ll need to see providers who specialize in treating adults.

Join the Conversation

On MyAtaxiaTeam, people share their experiences with ataxia, get advice, and find support from others who understand.

Who are the key members of your care team for Friedreich ataxia? Let others know in the comments below.