What is Marfan Syndrome?
Marfan syndrome, often colloquially referred to as Marfan’s, is a genetic disorder that affects the connective tissues in the body by defects in the fibrillin protein. While these connective tissues are located throughout the body, Marfan syndrome primarily affects the skeleton, joints, heart, and vascular system. For some people, these defects are mild, and they experience a few symptoms from the disorder. Severe Marfan syndrome can be fatal. People with Marfan syndrome have shorter lifespans on average, though those numbers are improving as treatments have become more effective.
Symptoms of Marfan syndrome often become worse with age. Symptoms include cardiovascular issues such as heart murmurs or prolapse, joint pain, skeletal deformities, and eye disorders such as glaucoma. Vascular problems can lead to severe complications such as aortic dissection or aneurysm. If your condition is severe enough to prevent work activity you may qualify to receive long-term disability benefits.
Diagnosing Marfan Syndrome
A diagnosis of Marfan syndrome is made by looking at patient medical history, symptoms, and test results. Diagnosis often starts by observing the patient’s physical characteristics, even in infancy. There are easily observable characteristics that are common in patients with Marfan syndrome. A tall, thin frame with long limbs, toes, and fingers is typical. Skeletal deformities can cause a sunken or protruding chest, deformed rib cage, or scoliosis in the spine.
If Marfan’s syndrome is suspected, further diagnostic testing is necessary to make a diagnosis. This can include:
- MRI and CT scan
- Genetic testing
Ghent criteria are used to make a diagnosis of Marfan syndrome. It is a set of guidelines that are used to score a person’s likelihood of having the disorder. This can include test results as well as physical characteristics.
Treating Marfan Syndrome
Marfan syndrome is incurable, but some treatments can help with symptoms. Medications such as beta-blockers can help with heart palpitations and chest pain. Joint pain may be treated with pain medication, devices such as braces, or physical therapy. In severe cases, heart or vascular surgery may be necessary.
Disability Evaluation of Marfan Syndrome
Patients with Marfan syndrome may be unable to work because of their conditions and their related complications. Patients who find themselves unable to work must apply for Long Term Disability (LTD) benefits. The insurance company will review their claim to see if they qualify under the conditions of that plan.
Definition of Disability
Most LTD plans consider a person disabled if they have a medical condition that causes them to 1) be unable to perform their work duties for the first two years of the policy and 2) be unable to complete the work duties of almost any occupation for the years following the initial 2-year period. Each LTD plan defines disability as slightly different, so look over your plan policy to see how your plan determines “disabled.”
Evaluating Disability for People with Marfan Syndrome
A diagnosis of Marfan syndrome is not enough to prove that someone is disabled. Patients seeking disability payments for their Marfan syndrome will have to prove that they are impacted in a way that they cannot perform their old job or any job that they could be trained to work.
To qualify for disability benefits, the condition must prevent the person from working for a least one full year. They will need a Residual Functional Capacity (RFC) assessment that indicates how their symptoms affect and limit their life activities.
For example, strenuous activity may not be possible for someone experiencing heart complications.
What the Insurance Company Needs From You and Your Medical Providers
You should tell the insurance company about any doctor that has treated you for your Marfan syndrome attacks. The insurance company will need to obtain all relevant medical records to get the full picture of your health. These records include office notes, clinical exams, diagnostic tests, and records of any treatments. If for any reason they cannot get these records from your doctors, you should request them and provide them to the insurance company yourself.
You will need to provide proof of your diagnosis and your ongoing symptoms, as well as proof of how you are affected by your symptoms. Providing detailed documentation is key to a successful claim. Residual Functional Capacity (RFC) assessments determine how you are affected by the condition and what you can do despite your limitations. It is used to determine what jobs you may still be qualified to perform. Make sure that you are as honest as possible with your doctors so that they can complete an accurate RFC for you.
Working with a Disability Attorney
Working with an experienced disability attorney will give you the best chance of getting the benefits you deserve for your Marfan syndrome. Even if you have been denied benefits, hope is not lost. Many people are denied benefits the first time they apply. You have the right to file an appeal and try to get more information that may help your case. Getting expert help is often the difference between being denied and being approved for benefits.
While the process can be daunting, your expert disability attorney will be able to guide you through the process. They do not get paid until you win your case. You can seek help without worrying about upfront costs or unexpected bills.
The Ortiz law firm has successfully represented people in disability cases across the United States. If you would like to talk to one of our experienced disability lawyers about your Marfan syndrome and its impact on your ability to work, call us at (888) 321-8131. We would be happy to evaluate your case and discuss how to help you through the process.