Living with Friedreich ataxia
A genetic condition of the nervous system that causes worsening problems with coordination, strength, speech and sometimes the heart.
Understanding Friedreich ataxia
People develop poor muscle coordination (ataxia) that worsens over time. Other features include gradual loss of strength and feeling in the arms and legs, muscle stiffness, and problems with speech, hearing, and vision. Many have thickened heart muscle (hypertrophic cardiomyopathy). Some develop diabetes or scoliosis. Most people start having symptoms between ages 5 and 15, though about 25 percent have a later onset that usually progresses more slowly.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes:
- Poor coordination and balance (ataxia)
- Loss of strength and feeling in arms and legs
- Muscle stiffness (spasticity)
- Speech, hearing and vision problems
- Thickened heart muscle
- Diabetes or curved spine (scoliosis)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists, eye disease specialists, genetic specialists and heart and blood vessel specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Friedreich's Ataxia Research Alliance (FARA), Hypertrophic Cardiomyopathy Association and MitoAction may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- Expert care
- Expert lists: Friedreich's Ataxia Research Alliance (FARA), Hypertrophic Cardiomyopathy Association, MitoAction
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Friedreich's Ataxia Research Alliance (FARA) and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in genes cause it. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Also known as: fa; fa - friedreich ataxia; familial ataxia; frda; frda - friedreich ataxia; friedreich's ataxia
Patient organizations
- Friedreich's Ataxia Research Alliance (FARA)Friedreich ataxia · United States
- Hypertrophic Cardiomyopathy AssociationFriedreich ataxia · United States
- MitoActionFriedreich ataxia · United States
- Muscular Dystrophy AssociationFriedreich ataxia · United States
- National Ataxia FoundationAtaxia · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Friedreich ataxia.
Explore research for Friedreich ataxia
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