The Sooner You Identify Patients With FA, the Sooner You Can Connect Them to the Management Team They Need to Stay Independent Longer
A diagnosis of Friedreich’s ataxia (FA) impacts the patient on many levels, from life-altering decreased ability to perform daily physical activities to the emotional devastation of being diagnosed with a progressive disease.
Quickly connecting your patients and their families to a broad, multidisciplinary disease management team is essential. These specialists will address the full scope of FA consequences, develop an individualized plan to help the patient adapt to declining function, and potentially extend their independence.1
Key Management Team Specialists for Your Patients
At the center of the FA multidisciplinary management team, a neurologist assesses a patient’s mobility, strength, and balance, while also evaluating disease progression.
Primary Care Physician (PCP)
A PCP screens for complications associated with FA and also provides consistent medical attention for all healthcare needs.
A cardiologist screens for and treats the high number of cardiac symptoms and potential cardiomyopathy that many patients with FA face. Clinical management guidelines recommend that a cardiologist perform an electrocardiogram and an echocardiogram at the time of diagnosis, then at least once a year.
An orthopedic surgeon can help recommend the best course of action for musculoskeletal developments, such as scoliosis, that are sometimes experienced by patients with FA.
The endocrinologist screens for glucose intolerance to establish a baseline in all patients with FA. When necessary, they can also help counsel patients with impaired glucose tolerance or diabetes on the importance of lifestyle changes and prescribe treatment to control blood sugar levels.
A physical therapist evaluates patients with FA for posture, balance, stability, and coordination. Recommendations may include an exercise plan that can help maintain quality of life while minimizing pain and disability.
An occupational therapist can help patients relearn functional skills and maximize their independence as FA progresses by finding new ways to accomplish everyday tasks. These specialists may also recommend mobility aids, assistive technologies, and techniques to better deal with fatigue or other symptoms.
FA can have a significant psychosocial impact on both patients and their families—from hopelessness and sadness to depression or anxiety. A psychiatrist can help patients cope with the emotional burden of this disease.
A social worker can help patients with FA apply for disability benefits, help find support groups, assist with insurance coverage, and coordinate arrangements for home care and assisted living.
A nutritionist can help manage common FA comorbidities, such as type 2 diabetes and cardiomyopathy, through dietary changes. This becomes more important if a patient develops issues with swallowing (dysphagia) and requires dietary changes to ensure that they are getting adequate nutrition.
Get the FActs about the mFARS and disease progression
See how changes to scores on the modified Friedreich’s Ataxia Rating Scale (mFARS) over time help predict future loss of function.
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Reference: 1. de Silva RN, Vallortigara J, Greenfield J, Hunt B, Giunti P, Hadjivassiliou M. Diagnosis and management of progressive ataxia in adults. Pract Neurol. 2019;19(3):196-207.
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