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Being a Caregiver for Someone with Friedreich Ataxia

Why caregivers for people with this genetic disorder need to prioritize their health, including mental health.

A support group for caregivers meets in a spacious room. Support groups can help caregivers connect with other people who have similar experiences.

Updated on February 15, 2024

Social support, counseling, and working with a mental health professional are important parts of treatment for Friedreich ataxia (FRDA), not only for people living with the condition, but also for families and caregivers.

FRDA is a genetic disorder that causes progressive damage to the nervous system, the heart, and other organs. In the early stages, FRDA can cause problems with standing, walking, and coordination. As the disease progresses, it can cause problems with speech and swallowing, vision and hearing, and mobility.

The onset of symptoms typically occurs in childhood, adolescence, or young adulthood (though it can occur later in some cases). There is no cure for the condition, and treatment focuses on addressing symptoms and complications. However, a drug that can help slow the progression of FRDA became available in 2023 (and is approved for people 16 years and older) and other therapies are under development.

FRDA and caregiving

People with FRDA often rely on help from caregivers, such as parents or other loved ones. Because FRDA is a progressive condition, the type of care and support a person with FRDA needs will change over time.

While caregiving can be a rewarding and fulfilling experience, it can also be emotional, stressful, and challenging. To provide the best care for a person with FRDA, a caregiver will need to prioritize their own physical and mental health. Here are a few strategies to keep in mind, and areas to consider focusing on:

Work with a mental health professional

This was already mentioned above, but it’s worth mentioning again. Counseling and therapy can help caregivers, family members, and people living with FRDA communicate with one another, discuss the diagnosis, and cope with the many complex feelings that come with a diagnosis like FRDA.

Connect with others

It’s important to remember that you and your family are not alone—there are other people who are living with FRDA and similarly life-altering conditions. It can help to connect with people who know what the experience can be like. Consider participating in a support group or seeking out organizations that provide support for families affected by FRDA. Also look for sports, activities, and other social opportunities for young people living with disabilities.

Don’t neglect your own needs

Many caregivers put the needs of others above their own needs. But in order to be an effective caregiver, a person will have to pay attention to their own needs—this includes eating well, staying active, getting enough sleep, paying attention to stress levels, and keeping up with healthcare appointments. This also means things like maintaining friendships and making time for yourself when you need a break.

Recognize the signs of caregiver burnout

Caregiver burnout happens when the demands of caregiving become too much. It is described as a state of mental, emotional, and physical exhaustion, and it is something every caregiver will want to take steps to avoid. The strategies discussed above can help prevent caregiver burnout. It also helps to recognize the signs:

  • Feeling emotionally, mentally, and/or physically exhausted
  • Feeling irritable or impatient
  • Difficulty concentrating and staying focused, forgetfulness
  • Lacking interest in activities that are typically enjoyable
  • Difficulty falling asleep, staying asleep, or getting enough restful sleep
  • Negative feelings towards the person you care for
  • Difficulty keeping up with basic needs, like eating meals and personal hygiene
  • Withdrawing from friends and family
  • Using alcohol, other substances, or other unhealthy behaviors as coping mechanisms
  • Headaches, stomachaches, other unexplained aches and pains
  • Anxiety, depression, feelings of hopelessness, low self-esteem

If you find yourself experiencing caregiver burnout, a good first step is to talk to a healthcare provider. You can also talk to your loved one’s healthcare team. Social workers can provide support, counseling, and strategizing to help you make changes to address burnout and avoid it in the future.

Ask for and accept help

Reach out to loved ones and friends when you need help. Help does not necessarily need to be taking on caregiving responsibilities (though it can be). It can also be help with errands, grocery shopping, chores, or anything else that can free up time and energy and make things a little easier. Also practice saying “yes” when someone offers help.

Article sources open article sources

Carla T. Williams and Orlando De Jesus. Friedreich Ataxia. StatPearls. August 23, 2023.
National Organization for Rare Disorders. Friedreich’s Ataxia.
National Institute of Neurological Disorders and Stroke. Friedreich Ataxia.
U.S. Food & Drug Administration. FDA approves first treatment for Friedreich’s ataxia. February 28, 2023.
Friedreich's Ataxia Research Alliance. Research Pipeline.
Maresa Buchholz, Niklas Weber, et al. Patient-reported, health economic and psychosocial outcomes in patients with Friedreich ataxia (PROFA): protocol of an observational study using momentary data assessments via mobile health app. BMJ Open, 2023. Vol. 13, No. 8.
Susan Perlman. Hereditary Ataxia Overview. GeneReviews. November 16, 2023.
Donna-Marie King. The Role of Therapy: Addressing Mental and Emotional Needs of Children with Rare Diseases. tgen — Part of City of Hope. November 28, 2023.
Centers for Disease Control and Prevention. Caregiving for Family and Friends — A Public Health Issue.
Mayo Clinic. Caregiver stress: Tips for taking care of yourself.
Johns Hopkins Medicine. Causes and Symptoms of Caregiver Burnout.
Cleveland Clinic. Caregiver Burnout.
Mount Sinai. Child and Family Social Work Services.
Family Caregiver Alliance. Taking Care of YOU: Self-Care for Family Caregivers.

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