Long Term Disability for Marfan Syndrome: What You Need to Know

If you experience Marfan syndrome, you may be considering your options for long term disability. Because this connective tissue disorder can affect your heart, joints, spine, lungs, and vision, its impact on your ability to work can be significant and unpredictable. Understanding how to qualify for long term disability and properly document your limitations can make a critical difference in the outcome of your claim.

Below we answer common questions those with Marfan syndrome have about the long term disability claims process.  

Can you qualify for long term disability benefits for Marfan syndrome?

Yes, you can qualify for long term disability benefits for Marfan syndrome. However, approval depends on how your condition limits your ability to work rather than the diagnosis alone. To receive benefits, your insurer requires proof that your symptoms prevent you from performing the material duties of your occupation as defined in your policy.

Marfan syndrome affects connective tissue throughout your body, and its impact can vary significantly from person to person. Some people are able to continue working with restrictions, while others experience serious complications that make full time employment unsafe or impossible.

Disabling Marfan syndrome symptoms may include:

• • Aortic enlargement or aneurysm risk: If your doctor restricts lifting, straining, or high stress activity to reduce the risk of a life-threatening event, you may be unable to safely perform physically demanding or high-pressure work.
  • Heart valve disease or arrhythmias: Shortness of breath, chest pain, dizziness, or fatigue can interfere with sustained concentration, travel, or physically active duties.
  • Chronic joint pain and instability: Connective tissue weakness can cause frequent dislocations, pain, and reduced mobility that make standing, typing, lifting, or repetitive tasks difficult.
  • Severe fatigue: Ongoing exhaustion can limit your ability to maintain a consistent work schedule or meet productivity expectations.
  • Vision complications: Lens dislocation or other visual impairments may affect your ability to safely perform detail oriented or visually demanding tasks.
  • Cardiovascular restrictions: If you have aortic enlargement, aneurysm risk, or valve disease, your doctor may restrict lifting, straining, or high stress activity. Physically demanding jobs or high pressure environments may no longer be medically safe.
  • Spinal complications: Scoliosis or dural ectasia can cause persistent back pain and nerve symptoms that limit prolonged sitting or physical activity.

Beyond proving your medical condition, you must also satisfy the specific eligibility criteria in your policy. Many long term disability policies require you to meet an elimination period before benefits begin, provide ongoing proof of disability, and comply with treatment recommendations. Some policies define disability under an “own occupation” standard for a limited period of time, then shift to an “any occupation” standard, which can make continued eligibility more difficult. Your insurer may also evaluate whether you can perform your job on a full-time basis, whether you are earning above a certain percentage of your prior income, and whether any exclusions or limitations apply.

How does Marfan syndrome affect your ability to work?

Marfan syndrome can affect your ability to work in ways that are both physical and functional. Because it is a connective tissue disorder, Marfan syndrome can impact your heart, blood vessels, joints, eyes, lungs, and spine. The combined effect of these complications may make it difficult to maintain a consistent, reliable, forty hour work schedule.

Common work related limitations include:

• • Cardiovascular restrictions: If you have aortic enlargement, aneurysm risk, or valve disease, your doctor may restrict lifting, straining, or high stress activity. Physically demanding jobs or high pressure environments may no longer be medically safe.
  • Shortness of breath and fatigue: Heart or lung involvement can cause reduced stamina, making it difficult to sit upright for long periods, travel for work, or maintain a normal pace throughout the day.
  • Chronic pain and joint instability: Loose joints, frequent dislocations, and musculoskeletal pain can interfere with standing, walking, typing, lifting, or repetitive tasks. Even sedentary work may become difficult if you cannot sit comfortably for extended periods.
  • Spinal complications: Scoliosis or dural ectasia can cause persistent back pain and nerve symptoms that limit prolonged sitting or physical activity.
  • Vision problems: Lens dislocation or severe nearsightedness can affect your ability to safely perform detailed or visually intensive work.
  • Frequent medical monitoring or recovery from surgery: Regular imaging, cardiology visits, or surgical procedures may lead to repeated absences that make full time employment unsustainable. 

Even if you can work part-time or perform limited duties, long term disability policies typically evaluate whether you can perform the material duties of your occupation on a full-time basis. If your Marfan syndrome symptoms prevent consistent attendance, productivity, or safe performance, that may support a claim.

How can I prove long term disability for Marfan syndrome?

To prove long term disability for Marfan syndrome, it’s important to demonstrate to your insurer how your symptoms and medical restrictions prevent you from performing the material duties of your occupation. Your diagnosis alone is not enough. Your insurer will focus on how your condition functionally limits your ability to work on a consistent, full-time basis.

Strong claims are built on detailed medical and vocational evidence that connects your condition directly to your job duties.

Important evidence to support your claim includes:

• • Comprehensive medical records: Office notes from your cardiologist, geneticist, orthopedist, ophthalmologist, and primary care physician documenting your diagnosis, symptoms, progression, and treatment history.
  • Objective cardiac testing: Echocardiograms, CT scans, MRI imaging, and other studies showing aortic enlargement, aneurysm risk, valve disease, or other measurable abnormalities.
  • Physician imposed restrictions and limitations: Written statements explaining what activities you must avoid, such as lifting limits, restrictions on exertion or stress, limits on sitting or standing, and the medical necessity of those restrictions.
  • Functional Capacity Evaluation: Formal testing that measures your ability to sit, stand, lift, carry, bend, concentrate, and sustain activity over time.
  • Documentation of chronic pain and fatigue: Consistent reports in your medical records showing how pain, instability, or exhaustion interfere with daily functioning.
  • Vision and orthopedic evaluations: Records confirming lens dislocation, severe nearsightedness, scoliosis, joint instability, or other complications affecting work performance.
  • Job description and vocational evidence: A detailed outline of your actual job duties, including physical demands, cognitive requirements, travel, deadlines, and stress levels.
  • Evidence of reduced work performance or attendance: Employer statements, performance reviews, or records showing missed work, reduced productivity, or accommodations that were not sufficient.

Your insurer will compare your documented limitations to the demands of your occupation. If your policy later shifts from an “own occupation” standard to an “any occupation” standard, your insurer may argue that you can perform some other type of work, which makes thorough documentation even more important.

Can chronic pain, fatigue, or joint instability from Marfan syndrome qualify you for benefits?

Yes, chronic pain, fatigue, and joint instability from Marfan syndrome can qualify you for long term disability benefits. However, these symptoms can be more difficult to prove because they are often considered “subjective.”

Your insurer does not evaluate whether your symptoms are real. Instead, it evaluates whether there is sufficient medical evidence showing that those symptoms prevent you from performing the material duties of your occupation on a consistent, full-time basis. Symptoms like pain and fatigue do not always show up clearly on imaging or lab tests, which can make claims more challenging.

Difficulties often arise because:

• • Pain is subjective: There is no blood test or scan that directly measures the severity of your pain. Your insurer may argue that normal or mild imaging findings do not support disabling limitations.
  • Fatigue is hard to quantify: Even severe exhaustion may not appear on diagnostic testing, leading your insurer to question whether it is functionally limiting.
  • Joint instability can fluctuate: Symptoms may vary day to day, and your insurer may focus on moments of improvement rather than the overall pattern of impairment.
  • Lack of detailed physician documentation: If your medical records only list diagnoses without describing specific functional restrictions, your insurer may claim there is insufficient proof of disability.

That said, subjective symptoms can still be proven when they are consistently documented and supported by the overall medical picture. Helpful evidence includes:

• • Consistent treatment records: Regular reports of pain, instability, and fatigue over time strengthen credibility.
  • Objective findings that support your complaints: Imaging showing joint abnormalities, scoliosis, or connective tissue issues can reinforce your reported symptoms, even if they do not measure pain directly.
  • Detailed functional restrictions: Clear statements from your doctors explaining how long you can sit, stand, lift, type, or concentrate before symptoms worsen.
  • Third party observations: Statements from supervisors, coworkers, family members, or others who have observed your physical struggles or reduced stamina.

Because your insurer often scrutinizes subjective symptoms closely, it is critical to present a clear, consistent, and medically supported explanation of how your pain, fatigue, or joint instability translates into specific work limitations.

Why do insurers deny long term disability claims for Marfan syndrome?

Your insurer may deny a long term disability claim for Marfan syndrome for several common reasons. In most cases, the denial is not based on whether you have the condition, but on whether your insurer believes the medical evidence proves that you cannot perform the material duties of your occupation.

Some of the most common reasons for denial of Marfan syndrome claims include:

• • Lack of objective medical evidence: Your insurer may argue that imaging, cardiac testing, or physical exams do not show findings severe enough to support disabling restrictions, especially when symptoms like pain and fatigue are involved.
  • Insufficient functional limitations: If your medical records confirm Marfan syndrome but do not clearly outline work-related restrictions, your insurer may claim there is no proof that you are unable to work.
  • Failure to connect limitations to job duties: Your insurer may assert that even if you have restrictions, they do not prevent you from performing your specific occupation as it is defined in your policy.
  • Reliance on paper reviews: In many cases, your insurer hires its own doctors to review your file without examining you. These reviewers may downplay the severity of your symptoms or disagree with your treating physicians.
  • Surveillance or social media monitoring: Your insurer may use brief video clips or online activity to argue that you are more physically capable than reported, even if those activities do not reflect sustained work ability.
  • Pre-existing condition arguments: If you had symptoms, testing, or treatment before your coverage began, your insurer may attempt to apply a pre-existing condition exclusion.
  • Claiming you can perform another occupation: If your policy shifts from an own occupation standard to an any occupation standard, your insurer may argue that you are capable of performing some other job, even if it is very different from your career.

Denials often result from incomplete documentation rather than a true lack of disability. Strengthening your claim may require identifying gaps in your medical records, obtaining more detailed provider opinions, clearly outlining your occupational demands, and addressing issues such as reliance on file reviews or surveillance.

How can a long term disability attorney help with a Marfan syndrome claim?

Navigating a long term disability claim for Marfan syndrome can feel overwhelming, especially when you are already managing serious health concerns. Because this condition often involves complex medical issues and subjective symptoms like pain and fatigue, your insurer may closely scrutinize your claim. An experienced long term disability attorney can help you present clear, persuasive evidence at every stage of the process so your limitations are fully understood.

A long term disability attorney can assist you with:

• • Filing a claim: Helping you complete claim forms accurately, identifying the strongest medical evidence, working with your doctors to obtain detailed restriction statements, and clearly explaining how your symptoms prevent you from performing the material duties of your occupation.
  • Protecting ongoing benefits: Once your claim is approved, your insurer will periodically request updated information. An attorney can obtain medical records, reviewing your documentation to identify gaps, request narrative reports from your treating physicians, and handle requests from your insurer for additional information.
  • Appealing a denial: Analyzing the denial letter, identifying weaknesses in your file, submitting additional medical and vocational evidence, and building a strong administrative record, which is especially critical in ERISA governed claims.
  • Litigation: Filing a lawsuit when appropriate, presenting legal arguments based on your policy language, and advocating for your right to past due and ongoing benefits.

At every step, the goal is to ensure that your insurer evaluates your claim based on complete and accurate information rather than assumptions about your diagnosis. With experienced legal guidance, you can strengthen your case, avoid common mistakes, and pursue the benefits you need while focusing on your health.

Riemer Hess Client Success Story

Our client “Dr. Smith” was a physician living with Marfan syndrome who had been receiving long term disability benefits for almost two years. However, his insurer terminated his claim during the change in definition from own occupation to any occupation. The termination followed an independent medical examination arranged by the insurer, where the examining doctor concluded he was capable of working. Facing the sudden loss of income and an uncertain future, Dr. Smith turned to Riemer Hess for help.

The attorneys at Riemer Hess immediately worked to strengthen the record. We arranged for a comprehensive Functional Capacity Evaluation to objectively measure his physical limitations and endurance. We obtained detailed, supportive statements from his treating specialists explaining why his cardiovascular risks, fatigue, and physical restrictions prevented sustained work. We also gathered witness statements from family and friends describing Dr. Smith’s visible decline and day to day limitations. In addition, Riemer Hess submitted proof that the Social Security Administration had awarded him disability benefits under its more stringent standard.

After reviewing the expanded record in the submitted appeal, the insurer overturned the denial and reinstated Dr. Smith’s long term disability benefits. Grateful for the outcome, he chose to retain Riemer Hess to continue protecting his ongoing benefits, ensuring that his financial security remains in place while he focuses on managing his health. 

At Riemer Hess, we’ve spent over 30 years helping professionals and executives navigate every stage of the long term disability claims process, from filing initial applications to handling appeals and litigating complex ERISA cases in federal court. We understand the tactics insurers commonly use to deny benefits and the strategies that lead to successful claim outcomes.

If you’re looking to file a long term disability insurance claim, appeal a wrongful claim denial, protect your ongoing benefits, or litigate your insurer, Riemer Hess can help. Contact us today at (212) 297-0700 or click the button below for a consultation on your disability case.