Disability for Charcot-Marie-Tooth: Social Security Benefits

Charcot-Marie-Tooth (CMT) syndrome is a genetic disorder that affects your peripheral nerves—the nerves outside your brain and spine. Also known as "peroneal muscular atrophy" or "hereditary motor and sensory neuropathy," CMT is one of the most common inherited neurological conditions.

CMT affects the way your sensory and motor nerves communicate with your brain and spinal cord, causing progressive:

• loss of muscle tissue (muscle atrophy), especially in your feet and legs, and
• loss of feeling in your limbs, toes, and fingers.

As your CMT progresses, you might have more difficulty walking or using your hands. CMT usually also causes you to lose your sense of touch in the affected body part. For instance, you might not be able to feel a blister that forms on your toe or heel.

There's no cure for Charcot-Marie-Tooth. Although symptoms can sometimes be managed with physical therapy, medications, and assistive devices (like leg braces), the damage caused by CMT isn't reversible.

Disabling Symptoms of Charcot-Marie-Tooth

Charcot-Marie-Tooth is a degenerative condition with symptoms that usually begin in the lower extremities but can spread to the hands and arms. Generally mild at first, CMT symptoms can include any or all of the following:

• numbness in the feet or legs
• weakness or paralysis of the foot and lower leg muscles
• difficulty lifting the foot (foot drop)
• trouble balancing
• foot deformities (high arches or hammertoes)
• diminished ability to feel cold, heat, or touch, and
• muscle cramping or nerve pain.

CMT symptoms generally become more debilitating over time. It's not uncommon for someone with Charcot-Marie-Tooth syndrome to lose their ability to walk and experience increased generalized weakness.

Can I Get Disability for My Charcot-Marie-Tooth Syndrome?

Some people with Charcot-Marie-Tooth syndrome can qualify for disability benefits through the Social Security Administration (SSA). To qualify for disability, Social Security must find that your CMT prevents you from working.

Social Security will first look at the medical evidence you've provided to determine whether your condition meets the requirements of the disability listing for peripheral neuropathy. Meet the listing, and you'll automatically qualify for disability.

One way to meet the peripheral neuropathy listing is by having severe and ongoing problems with two of your extremities (either an arm and a leg or both arms or legs). The limitations must cause you significant difficulty with activities like walking. Specifically, to meet the listing criteria, you must have difficulty balancing while getting up from a seated position, standing, or walking. You can also meet the listing if you can't use your arms and hands effectively to do things like write, type, tie your shoe, lift objects, or reach overhead.

Medical Evidence Needed to Prove Disability for CMT

You'll need adequate medical evidence to prove your CMT meets the listing. The more information you provide to Social Security at the beginning of the application process, the more quickly you'll be approved.

Social Security will need to see details about your symptoms and how they affect your ability to function. Your file should include a statement from your treating doctor explaining your condition and the limitations it causes (but the letter doesn't need to state whether your doctor thinks you're disabled).

Your medical records should include evidence of the basis for your Charcot-Marie-Tooth diagnosis, such as the results of:

• genetic testing
• nerve or muscle biopsies
• muscle-reflex exams
• nerve conduction velocity test, and
• electromyography (EMG).

You'll also want to share information about all the treatments and medications for CMT you've tried, including their effectiveness and side effects. Your medical records should date back to when your symptoms began and include recent medical records showing that you're still receiving treatment for CMT.

Learn more about how your doctor can help your disability claim.

What If My CMT Doesn't Meet the Listing for Peripheral Neuropathy?

You can still win your disability claim even if your CMT doesn't meet the above listing requirements. If you don't meet a listing, Social Security will review your documented symptoms and prepare a Residual Functional Capacity (RFC) assessment.

What's in an RFC for Charcot-Marie-Tooth?

An RFC assessment is a detailed report covering the work-related limitations caused by your Charcot-Marie-Tooth and what you can and can't do.

For example, people with CMT often experience frequent trips and falls. If you do, your RFC might state that you can't perform jobs that require balance or the ability to climb. This restriction would rule out most construction jobs and those requiring medium or heavy labor.

Also, if your CMT has caused decreased sensation in your arms, hands, legs, and feet, you might not be able to perceive when you've injured yourself. If that's the case, your RFC would likely state that you can't work with heavy equipment or in environments that expose you to the risk of injury.

You might have decreased sensation in your hands and fingers because of Charcot-Marie-Tooth syndrome. That would significantly limit your ability to handle or manipulate objects, preventing you from performing assembly line or sorting work and making most office jobs difficult.

If your symptoms have caused weakness in your legs, limiting how long you can walk or stand, your RFC would probably limit you to sedentary work.

How Does Social Security Use Your RFC?

Social Security will compare your RFC to your past jobs. If it doesn't look like you could do your prior work because of your limitations, the SSA will look at your job skills to see if there's any suitable work that you can learn to do that's within your RFC.

Social Security will also consider your education and age in determining if you could be trained for a new type of work. Learn more about how Social Security uses these factors to decide if you can still work.

How to Apply for Disability for Charcot-Marie-Tooth

There are two types of disability benefits you might be eligible to receive through Social Security:

• Social Security disability insurance (SSDI), and
• Supplemental Security Income (SSI).

If you've worked (and paid Social Security taxes) for long enough and recently enough, you can apply for SSDI in one of three ways:

• file an online application
• apply by phone by calling Social Security at 800-772-1213, or
• contact your local Social Security office to make an appointment to apply in person.

If you don't meet SSDI's work requirements, you might qualify for disability benefits through SSI. You can start the SSI application online, but you need to follow up in person or over the phone to complete the application.

Learn more about the legal and financial requirements for SSDI and SSI.

_{Updated November 17, 2023}