When Can I Get Social Security Disability for Marfan Syndrome?

Cardiovascular complications arising from Marfan syndrome may be serious enough to qualify for disability benefits.

By , J.D. · University of Baltimore School of Law
Updated by Diana Chaikin, Attorney · Seattle University School of Law

Marfan syndrome is a rare genetic disorder that affects the body's connective tissue, which supports your bones, muscles, and organs. With proper medical care, many people with Marfan syndrome can manage the disorder without significant interruptions in their daily routine. For some people, however, Marfan syndrome can result in cardiovascular complications like aortic aneurysms. When symptoms from these complications interfere with your ability to work, you may qualify for Social Security disability benefits.

Is Marfan Syndrome a Disability?

Because limitations from Marfan syndrome vary in severity from person to person, just having a diagnosis won't be enough to qualify for disability benefits. You'll need to show that your symptoms and complications from the disorder are severe enough to keep you from working full-time for at least one year.

Symptoms of Marfan Syndrome

As a connective tissue disorder, Marfan syndrome can cause symptoms in multiple body systems, such as your heart, blood vessels, bones, skin, lungs, and nervous system. People with Marfan syndrome tend to have distinctive physical features, including:

  • a tall, slender build
  • disproportionately long arms, legs, and fingers
  • a convex (curving outward) or concave (curving inward) chest
  • extremely loose, flexible joints
  • a high, arched roof of the mouth that crowds the teeth, and
  • severe nearsightedness.

These abnormalities aren't typically severe enough to keep someone from doing all work. People with the disorder can even be uniquely suited to certain jobs (Peter Mayhew, the actor who played Chewbacca in Star Wars, had Marfan syndrome). Social Security is more likely to find you disabled if you have any heart-related complications related to Marfan syndrome.

Complications of Marfan Syndrome

Marfan syndrome can weaken the aorta, the large vessel that carries blood from your heart to the rest of your body, causing the following complications:

  • aortic aneurysms (balloon-like bulges in the aorta)
  • aortic dissection (a tear in the inner layer of the aorta), and
  • valve malformations (stretched tissue).

Because aortic aneurysms that cause dissection are potentially life-threatening, Social Security evaluates these complications under Blue Book listing 4.10, Aneurysms of aorta or major branches. The Blue Book—also called the Listing of Impairments—is a catalog of medical conditions that Social Security considers severe enough to qualify for disability automatically.

Getting Disability for Marfan Syndrome by Meeting a Listing

Listing 4.10 describes the evidence you need in your medical records to establish disability automatically—that is, without having to show that you can't do any work. You'll have to provide medically acceptable imaging (such as an MRI, X-ray, or CT scan) documenting that you have an aortic aneurysm resulting in aortic dissection, and that your aneurysm is uncontrolled, meaning it doesn't get better with prescribed treatment.

If you haven't received ongoing medical treatment for an aortic aneurysm, you won't be able to qualify for disability under listing 4.10—but you might still get benefits if you can show that you have functional limitations that keep you from working. (For more information, see our article on getting disability for aortic aneurysms.)

Getting Disability for Marfan Syndrome by Showing You Can't Work

Not many people have the medical evidence necessary to qualify for benefits by meeting a listing. The more common way to qualify for disability is to show that you have a residual functional capacity (RFC) that rules out all jobs. Your RFC is a set of restrictions on what kinds of activities you can do in a work environment.

Social Security reviews your medical records, self-reported activities of daily living, and doctors' opinions to determine what restrictions to include in your RFC. Any limitations you have from Marfan syndrome and any other severe impairments should be addressed in your RFC.

What Does an RFC for Marfan Syndrome Look Like?

The specific restrictions in your RFC will depend on what your exact symptoms are and how severely they affect your functioning. For example, many people with Marfan syndrome have heart murmurs. While most heart murmurs cause few problems, more serious murmurs can cause dizziness, swelling, and trouble breathing. These symptoms could be reflected in your RFC as a restriction against working at heights, using heavy machinery, or exposure to airborne irritants.

The more severe your symptoms are, the more limitations you'll have in your RFC. If you get moderately fatigued when doing physical activities, your RFC might restrict your ability to lift and walk to the light exertional level. But if you feel out of breath lifting even lighter objects or while sitting down, your RFC could further limit you to sedentary work.

How Does Social Security Use Your RFC?

Social Security will look at the physical and mental demands of your past work and compare them with your current RFC to see whether you could do those jobs today. If not, the agency will then need to determine whether other jobs exist that you could perform despite the restrictions in your RFC.

Most applicants under the age of 50 need to show that they can't do the least demanding jobs before Social Security will find them disabled and award benefits. But if you're 50 years of age or older, you might be able to get disability even if you could physically perform an easier job under a special set of rules called the medical-vocational grid. (This is because Social Security doesn't expect you to be able to switch to other work the closer you get to full retirement age.)

Applying for Disability Benefits for Marfan Syndrome

Social Security makes it easy to start your application for disability benefits. You can choose the method you're most comfortable with.

  • File online at the agency's website, any time of the day. You don't have to finish your application all at once, but make sure you keep track of your "re-entry" number you get when you begin the application so you can return to it when you're ready.
  • Call the national number at 800-772-1213 (for the hearing impaired, the TTY number is 800-325-0778), from 8 a.m. to 7 p.m., Monday through Friday, to speak with a representative who can help with your application.
  • Go in person to apply at your local Social Security field office.

Before you submit your application, you should ask a Social Security representative or disability attorney whether you meet the non-medical eligibility requirements for at least one of the two disability benefit programs—Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). SSDI eligibility is based on your work history and the amount you've paid in payroll taxes, while SSI is available regardless of work history to people who have limited income and assets.

For more information, browse our overview section on the basics of SSDI and SSI.

Updated January 12, 2024

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