Disability Benefits for Charcot-Marie Tooth Disease (CMT)

Those with advanced Charcot-Marie Tooth disease should be able to get Social Security disability benefits.

Charcot-Marie Tooth (CMT) disease is a hereditary condition that affects the motor nerves (nerves controlling movement) in the legs. CMT disease causes leg muscles to weaken and atrophy (diminish in size) over time. Common symptoms of CMT disease include an arched foot resulting in pain while walking and standing, bilateral foot drop (problems raising the front part of the foot so the foot may drag upon the ground), and numbness in the legs. The disease can eventually spread to the hands and arms, and result in the hands' losing dexterity.

There is no cure for CMT disease. Similar to a related disease, muscular dystrophy, possible treatment includes surgery, physical therapy, and the use of foot braces to assist with walking.

Obtaining Disability Benefits for Charcot-Marie Tooth Disease

If you've been diagnosed with CMT disease and suffer from symptoms that have prevented you from working for at least a year, you can apply for Social Security Disability (SSD) or Supplemental Security Income (SSI) benefits.

The Social Security Administration (SSA) will obtain your medical records to determine your eligibility for benefits. Your medical history should include the results of any nerve conduction testing, statements from your doctors stating how CMT disease affects your ability to work, and whether medications effectively control your nerve pain.

There are two ways to qualify for disability benefits.

Meeting a Disability Listing

The SSA has created a Listing of Impairments known as the "Blue Book." If you meet the medical requirements for a disability listing, you'll be found disabled. Listing 11.14, the listing for Peripheral Neuropathy (injury to the nerves that send information from sections of the body to the spinal cord), applies to CMT disease.

To meet listing 11.14, you must prove that you have severe and ongoing problems using two extremities (either both legs or an arm and a leg or both arms), which causes chronic difficulty with your ability to walk, stand, or get up from a seated position or to use your arms and hands effectively. (Using your arms and hands refers to activities such as writing, typing, tying your shoe, lifting, or reaching overhead.)

The most crucial medical information for your disability application will be statements from your primary doctor and neurologist about your ability to walk and stand. The SSA also might ask you questions about how you perform your activities of daily living (ADLs) such as shopping, preparing meals, daily hygiene, and completing housework. The SSA will look to see if there are any inconsistencies in your medical records, your ADL statement, and your disability report.

Because CMT gets progressively worse with time, it is important to appeal any denial of your disability case. It is possible that your medical status could worsen while awaiting your next disability review, making it easier for you to get disability.

Determining Your Residual Functional Capacity

If you're not automatically found to be disabled under the disability listing for peripheral neuropathy, the SSA will assess your residual functional capacity (RFC). Your RFC is the most that you can do in performing basic work tasks. Depending on how long you can walk and stand, and how much you can lift and carry, you'll be given an RFC for medium work, light work, or sedentary work.

With CMT disease, you would commonly have pain after extended walking and standing, and you might have difficulty walking due to a bilateral foot drop. As such, the SSA may determine your RFC to be for sedentary work. Unless you're older in age, a sedentary work level would mean that you are not disabled, because there are plenty of simple, unskilled sedentary jobs.

But you can try to prove, at your disability appeal hearing, that you can't actually do a full range of sedentary work. Any of the following could help you prove that you can't do sedentary work:

  • You have nerve pain during the day that interferes with your ability to perform sit-down work.
  • You have any weakness in your hands or arms.
  • You can't comfortably sit for long periods of time.

And if you're older than 50, you can be found disabled even if you can do sedentary work. See our discussion of how the grid rules determine whether you will be found disabled.

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