Understanding Progression in FA
What happens as Friedreich
ataxia (FA) progresses?
FA is progressive, which means sensory neuron damage increases over time. This can lead to the loss of functional abilities as FA progresses. Symptoms don’t always appear in a predictable order, and the rate of progression varies from person to person. In general, progression of FA may include some or all of the below markers:
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about progression in FA
FA symptoms become apparent;
falls, clumsiness, feeling unbalanced,
loss of sensation, tiredness
Lower limb coordination
continues to decline
Mobility aids, such as canes or
walkers, may become useful
Speech starts to
sound slurred
Hand and arm
movements may
become less
coordinated
Many patients require the use of a
wheelchair 10 to 15 years after onset
of symptoms
Complications from FA, such as
diabetes or cardiomyopathy,
become more serious
If you have questions about progression in FA, or are experiencing any symptoms, be sure to discuss them with your care team.
How is progression
measured?
There are many ways to measure FA disease progression. Your doctor will decide which way is best for measuring your specific disease progression.
In clinical trials and natural history studies, FA progression is typically measured using a neurological exam called the modified Friedreich Ataxia Rating Scale (mFARS).
The mFARS exam evaluates 4 areas related to everyday activities:
Scores on the mFARS range from 0 to 93 points. A lower mFARS score means less functional impairment, while a higher score indicates greater functional impairment.
Understanding that mFARS scores can vary is important when discussing the rate of FA progression.
The rate of FA progression will vary from person to person, and mFARS scores will change on an individual basis. For example, patients who are diagnosed at a younger age typically see their mFARS scores rise more quickly than older patients.
Considerations that may help you manage your FA progression
Build a care
team
Having a network of healthcare providers in place can help you stay on top of the different ways FA may affect your body.
- A neurologist can track changes in your balance and coordination as FA progresses
- A physical therapist can help you exercise to keep your muscles moving
- A psychologist can help guide you through ways to maintain good mental health
- A primary care physician will keep an eye on your overall health and help you address any other conditions that may arise
Your care team will likely include other specialists such as an endocrinologist, an orthopedic therapist, and a nutritionist. As you continue your FA journey, you’ll find additional specialists who may help with the challenges you face.
Make a plan to
manage
symptoms
Symptoms of FA progress over time and can impact your day-to-day routines. Talk with your doctor about ways you can plan ahead to manage your symptoms. Some areas you may want to talk with your doctor about include:
- Assistive devices
- Having the right mobility aid can help you maintain your independence
- Braces can help bolster your arms, legs, and feet
- Using a cane, walker, or wheelchair may be necessary to help you navigate your environment
- Connecting with specialists
- Specialists can help you manage changes in your life as symptoms worsen
- For example, an occupational therapist can help support you in participating in activities that are important to you
- Physical therapists and speech therapists are other examples of specialists who can help you work toward maintaining your independence
- Surgery
- As FA progresses, it may be necessary to undergo surgery to correct skeletal problems
- Discussing surgery options with an orthopedic surgeon can prepare you to make decisions when the time comes
Discuss your care plan with your healthcare provider to see what the best options are for you. Individual results may vary.
Maintain a
healthy
lifestyle
When taking steps to manage the symptoms of FA, it’s also important that you remember to keep up your overall health. Make time each day to:
Exercise
Connect with
others
Get proper
sleep
Maintaining a healthy diet, taking care of your mental health, and finding outlets for stress are important parts of a healthy lifestyle that may be worth the effort.