Disability Benefits for Charcot-Marie-Tooth: Benefits & Filing Information
If Charcot-Marie-Tooth syndrome prevents you from working, you may be eligible for disability benefits from Social Security.
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Charcot-Marie-Tooth syndrome is a genetic disorder that affects your peripheral nerves, which are any nerves outside your brain and spine.
Disabling Symptoms of Charcot-Marie-Tooth
Symptoms of Charcot-Marie-Tooth can begin in childhood or during the early adult years and include foot deformities, diminished lower leg strength, numbness in the feet or legs, and weakness in the lower extremities. Eventually, sufferers may develop the same symptoms in their hands and arms.
As the disease progress, people with Charcot- Marie-Tooth syndrome often lose their ability to walk and experience increased generalized weakness.
Can I Get Disability for My Charcot-Marie-Tooth Syndrome?
To determine if you can receive disability because of your Charcot-Marie-Tooth syndrome, the Social Security Administration (SSA) must find that the disease prevents you from doing any work.
The SSA will first look at the medical evidence you have provided to determine whether your illness meets the disability listing for peripheral neuropathies. If it does, you will qualify you for automatic approval. The main criteria for the peripheral neuropathy listing is that you have severe and ongoing problems controlling the movement of two extremities (either an arm and a leg or two arms or two legs) causes chronic difficulty with your ability to walk or stand or to use your body to perform gross and dexterous movements, despite following your doctor’s treatment plan.
Gross motor movements refer to activities such as lifting, reaching overhead, pushing, pulling, crawling, and maintaining balance. Your large muscles, such as your biceps or quadriceps, are responsible for gross motor movement. Dexterous motor movements involve the small muscles in your hands and fingers and refer to activities like writing, typing, tying your shoe, or buttoning your clothes.
It is helpful if your medical records include evidence of your Charcot-Marie Tooth diagnosis, such as nerve or muscle biopsies or genetic testing. The more information you provide to the SSA at the beginning of the application process, the more quickly you will be approved.
What If My Charcot-Marie-Tooth Syndrome Doesn’t Meet the Criteria for Peripheral Neuropathy?
You can still win your claim for disability even if your illness does not meet the above listing requirements. The SSA will also review your documented symptoms and prepare a Residual Functional Capacity assessment (RFC). An RFC is a detailed report that discusses the work-related limitations caused by your Charcot-Marie-Tooth. For example, people with Charcot-Marie-Tooth syndrome often experience frequent trips and falls. Therefore, if you suffer from this problem, your RFC may state that you cannot perform jobs that require balance or the ability to climb. This restriction would preclude most construction-type jobs and jobs that require medium or heavy labor.
If your symptoms have caused weakness in your legs, limiting the amount of time you can walk or stand, your RFC would probably limit you to sedentary work. Also, because of decreased sensation in the arms, hands, legs and feet of people with Charcot-Marie-Tooth syndrome, you may not be able to perceive when you have injured yourself. In this case, an RFC would likely state that you must avoid working with heavy equipment or in other environments that expose you to the risk of injury.
Those with Charcot-Marie-Tooth syndrome sometimes experience decreased sensation in their hands and fingers. Such an individual would be significantly limited in his or her ability to feel, finger, or handle objects. This limitation would prevent a person from performing assembly line or sorting work and would make most secretarial jobs difficult.
After including these types of limitations in your RFC, Social Security will compare your RFC to your past jobs and job skills to see if there is any work that is suitable for you that you can do with your limitations. Social Security will also consider your education and age in determining if you could be trained for a new type of job. For more information on how Social Security makes this determination (called a medical-vocational assessment), see our section on RFCs and medical-vocational allowances.