A genetic disorder, which is caused by defects in the protein fibrillin, Marfan syndrome impacts the formation of connective tissues. Tissues usually impacted include those around the heart, skeleton, and blood vessels. While there are mild cases with minimal treatment requirements, there are severe cases that can be potentially lethal. If you are suffering from a severe case of Marfan syndrome and it has made you unable to work, you may be eligible to Social Security disability benefits.
While people from all around the world, of all races and genders, can suffer from Marfan syndrome, the symptoms of the condition have a tendency to worsen with age. Those with this disorder have the tendency to be taller with limbs that are longer. They also have a skinny frame. Curvatures of the spine or scoliosis are also common. Flat feet, sternum protrusion, muscular and skeletal deformities, and other problems may be evident.
If you have Marfan syndrome, you may also have heart murmurs or other cardiovascular problems, such as valve prolapses or palpitations. You may also have an increased risk of eye disorders, including glaucoma and eye disorders. While some people with the disorder may be able to live a normal life as long as they get the proper medical care and don’t participate in strenuous activities.
There is no cure for the disorder, but some symptoms may be treated by using beta-blockers for heart palpitations and pain relievers for the pain. You may have a more severe case that requires heart surgery.
The Social Security Administration (SSA) oversees a program called Social Security Disability Insurance (SSDI). If you meet the requirements set forth of being fully disabled, you may be eligible to receive monthly disability benefits. You must have worked enough to earn enough credits and to have paid in enough in Social Security taxes.
The Cost of Treating Marfan Syndrome
Because it is a chronic illness that will require ongoing treatment, Marfan syndrome is a costly disorder. According to Greenwood Genetic, the testing for the disorder is $2,000 for sequencing, $350 for known mutation, and $700 for duplication analysis.
The Marfan Foundation points out there are regular doctor appointments, testing, medications, and the cost of any treatments, such as surgeries or therapy. On average, you can expect to pay out $3,000 to $5,000 per year for your treatment of symptoms and ongoing medical care for Marfan syndrome.
If you apply for SSDI or SSI, you may be able to receive financial benefits to help with your medical costs.
The SSA Evaluation and Medical Qualifications
The Blue Book is the medical guide used by the SSA to determine whether or not an individual is disabled. The SSA has strict guidelines regarding disability. In order to be disabled, you must be determined to be unable to work at all. The SSA does not award benefits for partial disability. You must also be unable to work for at least a full year, and the first six months are not eligible for receiving benefits.
There is no specific Blue Book listing for Marfan syndrome, but you can be listed under a listing within the Blue Book that is associated with your symptoms. Those listings could include the following:
- Section 1.00 – Conditions Affecting the Spine or Joints
- Section 2.00 – Vision Disorders and Blindness
- Section 4.00 – Cardiovascular Disorders
- Section 4.10 – Aneurysm of Aorta or other Major Branches
You have to be able to demonstrate the severity of your case and symptoms in order to qualify for monthly Social Security disability benefits. If you do not meet the requirements of a Blue Book listing, you may be eligible for SSDI by using a medical-vocational allowance with a residual functioning capacity (RFC) form, which you can ask your doctor to complete.
Meeting Disability Criteria with an RFC and a Medical-Vocational Allowance
An RFC is a detailed form that tells all of your symptoms and how they impact your ability to work. As an example, if Marfan syndrome has caused severe heart problems your physician should indicate that is the case and how these cardiac problems cause fatigue and sleep problems. It should indicate how these symptoms keep you from standing for long periods, walking long distances, and repeatedly bending or lifting.
If Marfan syndrome affects your vision and keeps you from seeing small print or instructions, that should also be noted on the form. Other problems, such as severe pain in the knee and ankle joints and how that impacts your walking and standing should also be noted. If you have undergone heart surgery, your doctor should state that and how that impacts your ability to work.
When using the medical-vocational approach, Disability Determination Services will also consider your age, education level, work experience, and any transferable skills. They will determine if you are able to do lighter, more sedentary work if you cannot return to your regular work duties. The SSDI process is very detailed and complicated.
The more documentation that you provide for your case, the better your odds of being approved for benefits. Provide all your medical records, tests and test results, physician notes, documentation of how your condition has progressed and impacted your ability to function and work.
Applying Specific Medical Tests to Your Case
If you suffer from Marfan syndrome, you undergo extensive testing for a variety of bodily systems. Among those may be your heart, lungs, and musculoskeletal systems. You will have blood tests, MRI and CAT scans, and x-rays that should be included as evidence for your case. As previously mentioned, documentation is the key for your disability case.
It is not uncommon for the SSA to order a medical evaluation at their expense for informational purposes. This is not to provide medical treatment, but to provide them with additional information to determine the severity of your symptoms and if they are severe enough to keep you from working every day.
There may be cases when a mental evaluation is ordered to determine if you are suffering mentally because of your condition and if that is coming into play with regards to your ability to work. Many people with Marfan syndrome may experience anxiety, depression, frustration, and other problems because of their ongoing medical symptoms and the unexpected turns experienced by the chronic condition.