Marfan syndrome is a genetic connective tissue disorder that gets worse with age. Triggered by a mutation in a gene called FBN1, Marfan syndrome affects only 1 in 5,000 people, according to the CDC. A reader asked recently if this condition qualifies for disability benefits:
Reader question: Is Marfan syndrome eligible for Social Security disability?
Answer: Yes. It’s in the SSA blue book listed under cardiovascular health issues.
Below, we’ll explain how to qualify for SSD benefits if you have this rare health condition.
How Marfan Syndrome May Impact Your Ability to Work
Marfan syndrome affects several body systems, including your:
- Blood vessels
- Nervous system
It can also cause blood vessel and heart abnormalities, such as a leaky valve that causes a murmur. These abnormalities may cause shortness of breath and fatigue. It may also weaken and stretch the your aorta, which can lead to sudden death.
Marfan syndrome’s symptoms can be either mild or severe. As a result, when doctors first diagnose most people, they can likely still work full time. As the disease progresses, however, you may need to stop working and apply for SSD benefits. There is no cure, but treatments can help you live with the disease long-term.
How the SSA Evaluates Marfan Syndrome Disability Claims
There is no specific test for Marfan syndrome. Instead, your doctor must diagnose you by reviewing you and your family’s medical history. The SSA will evaluate how Marfan syndrome affects your daily life and what specific functional limitations you have as a result. That said, you should know that your diagnosis does not automatically qualify you for benefits.
This is why it’s important to submit detailed medical records along with your SSD claim.
First, you’ll need to undergo a scheduled consultative exam. You must attend this free exam from a Social Security doctor to qualify for benefits. During your visit, the doctor may perform certain tests, including:
- An evaluation that measures the ratio of your arm/leg size to your trunk size
- A slit lamp eye exam
- A heart test, such as an echocardiogram
- In some cases, doctors may also request a genetic analysis
IMPORTANT: Please note that not everyone with this rare disease develops heart issues from it right away. So, your age will likely play a role in deciding if you may qualify for benefits.
BONUS TIP: You’re more likely to succeed when you list other health problems on your claim.
If you work with a doctor referred to you by Marfan.org, they will likely know how to document your symptoms and how these symptoms directly affect your ability to work. For example: Perhaps you suffer from chronic fatigue or poor vision. Your doctor can note the ways these symptoms make computer tasks or physical labor impossible to do.
Medical Documents You’ll Need to Support Your Claim
Because the SSD application process is long and hard, the more medical evidence you provide, the better. When you next see your doctor, ask for copies of:
- Your complete medical records
- All tests and test results from the past 12 months
- Physician notes about your condition
- Documents showing how your Marfan syndrome responds to treatment, including symptom changes
- How your symptoms impact your ability to do daily living tasks, such as cooking, dressing, cleaning, running errands, etc.
What Marfan Syndrome Treatments Are Available?
According to the National Institutes of Health, treatments may include:
- Braces to help keep any curves in your spine from growing worse
- Glasses or contacts to correct vision problems
Steering clear of high-exertion physical activities or intense job tasks, such as lifting heavy objects, is generally important for Marfan syndrome patients. However, doctors usually encourage moderate types of exercise, like swimming or walking. Sometimes physical therapy can also help strengthen your muscles, which may prove helpful. Doctors also often prescribe anti-inflammatory drugs and pain medications to help manage symptoms. As symptoms worsen, however, you may need heart surgery.
Again, be sure to request your complete medical records from every doctor that treats your Marfan syndrome. In general, heart problems can qualify you for disability benefits if they prevent you from working for at least one year. But it bears repeating: Put every health issue you have on your disability application.
How to Get Free Expert SSD Claim Help
Worried your Marfan syndrome alone isn’t enough to qualify you for benefits? A disability lawyer can answer your claim questions over the phone free of charge.
You’ll pay $0 now for help filing a claim, since these lawyers always work on contingency.
Want free expert claim help now? Click the button below to start your free online benefits quiz and see if you may qualify:
Laura Schaefer is the author of The Teashop Girls, The Secret Ingredient, and Littler Women: A Modern Retelling. She is also an active co-author or ghostwriter of several nonfiction books on personal and business development. Laura currently lives in Windermere, Florida with her husband and daughter and works with clients all over the world. Visit her online at lauraschaeferwriter.com and linkedin.com.