Friedreich’s ataxia is a neuromuscular condition that causes progressive loss of mobility and independence. In most cases, symptoms begin early in life, and many people with the condition begin experiencing effects by age 15.
Caregivers play an important role in the lives of those with Friedreich’s ataxia, especially given the young age of onset. Caregivers may help their loved ones in a variety of ways, including helping them navigate their healthcare needs, helping them adapt to changing circumstances and abilities, and providing support as their condition progresses.
Friedreich’s ataxia is a rare disease, affecting an estimated
But you and your loved one aren’t alone, and there are many organizations and resources available to help support people living with Friedreich’s ataxia and the people who care for them.
Friedreich’s ataxia affects many aspects of a person’s health — not just mobility. The ability to talk or communicate with others, swallow and eat, and interact with surroundings can also be affected. People with Friedreich’s ataxia may also develop other health concerns, such as heart disease or diabetes, that require additional care.
Caregiving responsibilities can be time-consuming. Many people caring for a loved one with a rare disease find that their work, schooling, and social lives are affected as their responsibilities at home begin to grow.
Mental and emotional health can be impacted too. There is no cure for Friedreich’s ataxia — even with the best supportive care, the condition progresses. This can be emotional and difficult for caregivers and loved ones.
According to a report from the National Alliance for Caregiving, two-thirds of caregivers said that caring for a loved one with a rare disease is emotionally stressful, and more than 40% reported that their mental health has suffered.
In the 2017 Voice of the Patient report, organized by several prominent Friedreich’s ataxia professional and patient organizations, caregivers shared their personal experiences caring for a loved one with the condition and the challenges that go along with that, describing feelings of fear, anger, and hopelessness for not being able to do more for their loved ones.
Caregiving responsibilities don’t just affect mental health, though. More than half of rare disease caregivers – including 64% of caregivers of children – reported that it was difficult to take care of their own health while caring for a loved one, and one-third said that their physical health has been negatively affected.
It’s hard work being a caregiver for someone with Friedreich’s ataxia. It’s OK to ask for help to ensure that you and your loved one get the support and care you need.
Caring for a loved one with Friedreich’s ataxia has many moving parts, and it’s understandable that you may need help sometimes. Resources are available from a variety of sources, including:
- professional organizations
- nonprofit patient groups
- pharmaceutical companies
- the federal government
Educational resources
Receiving a rare disease diagnosis can be overwhelming if you haven’t heard of the condition before or don’t know much about it. Learning about Friedreich’s ataxia — including what causes it, how it’s managed, and what to expect as the disease progresses — can help caregivers feel more confident as they navigate their new reality with their loved one.
Resources such as the National Organization for Rare Diseases (NORD), and the Genetic and Rare Disease Information Center from the National Institutes of Health (NIH) offer information on Friedreich’s ataxia in a way that’s understandable and easy to navigate.
The Friedreich’s Ataxia Research Alliance (FARA) also offers educational resources on their website for understanding specific aspects of Friedreich’s ataxia care, including medications, clinical trials, and considerations related to COVID-19.
The National Alliance for Caregiving has also put together a free guidebook for caregivers of children with rare diseases that can be found on their website.
Education and employment resources
People living with Friedreich’s ataxia may require additional support as they navigate their work and school life.
The NIH Rare Disease website also provides information on how to advocate for your child at school, including opportunities for early intervention and adaptations to help them get the most out of their education. They offer information on how to request workplace accommodations, apply for disability benefits, and advocate for your loved ones if their employment rights are challenged.
Additional resources specifically for people with neuromuscular disorders such as Friedreich’s ataxia are also available from the Muscular Dystrophy Association (MDA), including resources for both children and young adults transitioning into a more independent living situation.
Even more resources are available from FARA, including information on how to find colleges and independent living facilities that are accessible for people with disabilities and mobility concerns. They also offer information on how to identify adaptive sports opportunities available in your area.
Financial and healthcare resources
Resources for navigating healthcare costs, insurance coverage, disability benefits, and pharmacy assistance programs are available through a variety of organizations, including the:
The NORD list of patient organizations and assistance programs includes additional information on symptom-specific support opportunities, including resources for people with diabetes, deafness, and scoliosis.
These resources can help reduce the financial burden of Friedreich’s ataxia care, which caregivers often assist their loved ones with.
Given the effect that caregiving can have on your mental health, particularly if a rare disease is involved, it’s important to take care of your own emotional wellness and build a community of support around you.
Remember that neither you nor your loved one is alone, and there are others who share your experiences and concerns who can help provide emotional support and help you navigate your new reality.
The National Ataxia Foundation provides a list of online support groups that are available to caregivers of people with ataxia, as well as links to find community support groups. They also provide media recommendations such as podcasts, blogs, books, and websites to learn more and connect with others who share your experiences.
The Friedreich’s Ataxia News Forum also offers a space for people with the condition and their loved ones to discuss their experiences with others and ask questions of people who know about the disease.
The NIH Rare Disease Center offers tips and support for caregivers of people with Friedreich’s ataxia to help them care for themselves, including:
- identifying respite care services
- connecting with other caregivers
- supporting your own emotional health
Support can come from a variety of sources, both professional and personal. Caring for yourself is an important part of being a caregiver and should not be overlooked.
Caring for a loved one with Friedreich’s ataxia can be physically, socially, and emotionally challenging. Building a community of support from others who understand what you and your loved one are going through can help validate your experiences and feelings and support your emotional well-being.
There are a variety of resources available to caregivers to help navigate caring for someone with Friedreich’s ataxia, including financial, medical, and educational support. If you have any questions about how to access these resources, your loved one’s healthcare team can help you get started.
