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Getting Short or Long Term Disability for Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome Disability Claims

If you suffer from Ehlers-Danlos Syndrome (“EDS”), you may be eligible for short or long term disability benefits depending on how your condition affects your ability to work.  Ehlers-Danlos Syndrome is a group of inherited disorders that affect the connective tissues in your body, such as your skin, joints, and blood vessels that can cause many significant physical and cognitive symptoms.  

In this article, we will explain how EDS may impact your work performance, what you need to do to apply for short or long term disability benefits, and how to strengthen your chances of getting approved.


How Can Ehlers-Danlos Syndrome Impact My Ability to Work?

chronic pain from Ehlers-Danlos Syndrome can cause long term disability

Ehlers-Danlos Syndrome (“EDS”) is a group of genetic disorders that primarily affect your skin, joints, and blood vessel walls.  Its impact on your ability to work can vary significantly depending on the type of EDS you have and the severity of your symptoms.  EDS is characterized by hypermobility (excessive flexibility of your joints), skin that can be stretched farther than usual and is fragile, and a tendency to bruise easily.  These primary symptoms, among others, can lead to a wide range of challenges in the workplace.

Physical symptoms that might impair your ability to work include:

  • Joint hypermobility, leading to frequent dislocations and sprains, which can make physical tasks challenging and increase the risk of injury on the job.

  • Skin fragility, meaning minor injuries can lead to significant wounds or scars, potentially limiting your ability to handle certain materials or work in environments where cuts and abrasions are more likely.

  • Chronic pain and fatigue, which are common among people with EDS, can make it difficult to maintain regular work hours or complete tasks that require prolonged periods of concentration or physical effort.

Cognitive symptoms, often overlooked, can also impact your work performance.  Some individuals with EDS experience:

  • Brain fog, characterized by episodes of confusion, forgetfulness, and difficulty focusing.  This can hinder your ability to perform tasks that require attention to detail or manage complex projects.

  • Anxiety and depression, resulting from the chronic pain and the stress of managing a long-term condition, which can affect your mental health and reduce your overall productivity.

The types of EDS vary, with the most common being the Hypermobile type, which primarily affects the joints but can also have systemic manifestations.  Other types, like the Classical, Vascular, and Kyphoscoliotic types, come with their own set of challenges, including more pronounced cardiovascular issues in the case of Vascular EDS, which could necessitate accommodations or changes in work responsibilities.

Given these physical and cognitive challenges, your ability to work may be affected in several ways.  You might require flexible scheduling, modifications to your work environment, or even alternative job duties that accommodate your condition’s limitations.  Understanding the nature of EDS and its impact on your body is crucial in advocating for the necessary adjustments to ensure a safe and productive work life.


Why is Ehlers-Danlos Syndrome Misunderstood or Overlooked in Disability Claims?

Ehlers-Danlos symptoms can be as unpredictable as this foggy mountain road

Ehlers-Danlos Syndrome (“EDS”) is often misunderstood or overlooked in disability claims due to the wide variability of its symptoms and a general lack of awareness about the condition’s impact on your daily functioning.  Each individual with EDS experiences the disorder differently, with symptoms ranging from mild to severe, and this inconsistency can make it challenging for those evaluating disability claims to fully grasp the extent of your impairment.

One of the key reasons EDS is misunderstood is the variability of its symptoms.  You might have joint hypermobility, skin elasticity, chronic pain, and fatigue, while another person with EDS might present with cardiovascular issues, digestive problems, or severe bruising.  This broad spectrum of symptoms, which can fluctuate in severity over time, often leads to skepticism or misinterpretation by your insurer when assessing your disability claim.  The misconception that flexibility or being “double-jointed” is advantageous rather than disabling further complicates the understanding of your condition’s severity.

Moreover, EDS is a complex, multi-systemic condition that not only affects your physical health but also your mental and emotional well-being.  Symptoms like chronic pain and fatigue can lead to or exacerbate secondary mental health issues such as anxiety and depression, affecting your ability to work.  These cognitive and psychological aspects of EDS are frequently underestimated or entirely overlooked in the evaluation of disability claims.

The general lack of awareness about EDS among healthcare professionals and the public contributes to the challenge.  Many medical practitioners are not fully educated on EDS, its diagnosis, or its impact, which can lead to underreporting, misdiagnosis, or dismissal of your symptoms.  Consequently, when you file a disability insurance claim, you may find that the medical evidence supporting your case does not fully capture the extent of your condition’s impact on your daily life and work ability.

Furthermore, the invisible nature of many EDS symptoms means that on the surface, you may appear healthy and capable, leading to misunderstandings about the true extent of your disability.  This discrepancy between how you look and how you feel can result in your claim being underestimated or denied, as the evaluators may not recognize the significant challenges you face in your daily activities and employment.


What Evidence is Essential for Proving Disability Due to Ehlers-Danlos Syndrome?

When proving disability due to Ehlers-Danlos Syndrome (EDS), it’s vital to compile a comprehensive set of evidence that illustrates the extent of your condition and its impact on your ability to work. This evidence should paint a clear picture of your physical and cognitive limitations, providing undeniable proof of your disability. Here’s what you need:

  • Medical Records: Your medical records are foundational to your claim. They should include a detailed diagnosis of EDS, notes on your symptoms, treatments you’ve undergone, and any surgical interventions. Ensure these records chronicle the progression of your condition over time, showcasing how it has impacted your health and daily functioning.

  • Doctors’ Statements: Letters or statements from your healthcare providers are critical and should include a statement from your attending physician. These should not only confirm your diagnosis but also explain how EDS affects your life. Your doctors should detail your physical limitations, pain levels, susceptibility to injuries, and any other EDS-related complications. Importantly, they should explicitly link these issues to your inability to maintain employment.

  • Functional Capacity Evaluation (FCE): A functional capacity evaluation provides objective data about your physical capabilities, such as your ability to lift, carry, stand, and walk, and your endurance levels. This evaluation can demonstrate how your joint hypermobility, pain, and fatigue limit your physical function, offering concrete evidence of your work-related restrictions.

  • Neuropsychological Evaluation: Given that EDS can lead to cognitive symptoms like brain fog, memory problems, and difficulties with concentration, a neuropsychological evaluation can be invaluable. This assessment outlines any cognitive deficits and their severity, offering insight into how these issues affect your work performance and daily activities.

  • Vocational Assessment: A vocational assessment evaluates your employment capabilities by considering your educational background, work experience, skills, and limitations due to EDS. It helps in determining the kinds of jobs you can do, if any, given your physical and cognitive restrictions. This assessment can argue effectively that your disability precludes you from maintaining gainful employment.

  • Personal Statements and Daily Activity Logs: Your personal statement about living with EDS and how it affects your life can provide a unique perspective that medical records and evaluations might not capture fully. Daily activity logs can also support this by offering a detailed account of your struggles and the adjustments you’ve had to make due to your condition.

Gathering this evidence might seem daunting, but it’s essential for a strong disability claim. Each piece contributes to a comprehensive understanding of how EDS impacts your life, particularly your ability to work. With thorough and detailed documentation, you significantly improve your chances of having your disability recognized and supported.


How Do I Start the Process of Filing for Short or Long Term Disability for Ehlers-Danlos Syndrome?

Starting the process of filing for short or long-term disability due to Ehlers-Danlos Syndrome (“EDS”) involves several critical steps to ensure your application is comprehensive and accurately reflects your condition’s impact on your daily life and ability to work.  Here’s some general guidance to help you navigate the initial stages:

  • Understand Your Insurance Policy: Begin by thoroughly reviewing your disability insurance policy, whether it’s a private plan or one provided by your employer.  Pay close attention to the definition of disability, coverage details, and the claim filing process.  Understanding these aspects is crucial for tailoring your application to meet specific criteria.

  • Consult with Your Healthcare Providers: Schedule appointments with your healthcare providers to discuss your intention to file for disability benefits.  Their support is essential, as you’ll need detailed medical records and statements that specifically describe how EDS affects your functional capabilities.  Make sure they detail your diagnoses, treatment plans, and the impact of EDS on your daily activities and work.

  • Gather Essential Documentation: Compile all relevant medical documentation related to your EDS, including medical records, diagnostic test results, treatment histories, and notes from your doctor visits.  Documentation should emphasize how EDS limits your ability to perform work-related tasks and any other daily activities.

  • Obtain Additional Evaluations if Necessary: Consider undergoing a Functional Capacity Evaluation (“FCE”), neuropsychological testing, or vocational assessment to provide objective evidence of your limitations.  These assessments can be pivotal in demonstrating the extent of your disability and its impact on your ability to work.

  • Prepare Your Claim Application: Fill out the disability claim form provided by your insurance company with meticulous attention to detail.  Be honest and thorough in describing how EDS impacts your work life.  Include all the gathered documentation as part of your claim package.

  • Seek Legal Advice: Filing for disability benefits can be complex, and denials are not uncommon.  Consulting with an attorney who specializes in disability law, especially one familiar with EDS, can provide you with advice on navigating the process and advocating for your rights.

By following these steps, you’ll be well-prepared to initiate the process of filing for short or long term disability benefits for Ehlers-Danlos Syndrome.


What Are the Common Reasons for Denial of EDS Disability Claims, and How Can I Appeal a Denial?

approval and denial wooden blocks for ehlers-danlos

If your disability claim due to Ehlers-Danlos Syndrome (“EDS”) is denied, it’s crucial to understand why your insurer rejected your claim and how to effectively appeal the denial.  Denials can be disheartening, but knowing why claims are often rejected can help you address these issues head-on, whether you’re filing your initial claim or preparing to appeal an adverse determination.

Common Reasons for Denial of EDS Short or Long Term Disability Claims

Common reasons for denial of short or long term disability EDS claims include:

  • Insufficient Medical Evidence: One of the primary reasons for the denial of EDS disability claims is the lack of sufficient medical evidence.  Because EDS symptoms can vary widely and are sometimes subjective (like pain), insurers may argue that there’s not enough objective evidence to prove your disability.  This can include a lack of detailed medical records, specific tests, or specialist reports that confirm the severity of your condition.

  • Failure to Meet the Policy’s Definition of Disability: Disability claims can also be denied if the insurance company believes you do not meet their specific definition of disability.  Each policy has its criteria, which often requires proof that your condition prevents you from performing your job duties or any job at all, depending on the policy terms.  If the insurer thinks you can still work in some capacity, they may deny your claim.

How to Appeal a Denial of Your EDS Short or Long Term Disability Claim

If your EDS disability claim has been denied, you may feel frustrated and overwhelmed.  However, you have the right to appeal the decision and fight for the benefits you deserve.

Here are some steps to follow when appealing a denial of your EDS short or long term disability claim.

  • Review the Denial Letter Carefully: Start by thoroughly reviewing the denial letter.  It should explain why your claim was denied and provide information on the appeals process, including deadlines.  Understanding the specific reasons for the denial will guide your appeal strategy.

  • Gather Additional Evidence: Based on the denial reasons, gather more medical evidence to strengthen your case.  This may include more detailed doctors’ statements, new medical tests, and evaluations that address the insurer’s concerns.  Consider getting a Functional Capacity Evaluation (“FCE”), neuropsychological evaluation, or vocational assessment if you haven’t already, as these can provide compelling objective evidence of your disability.

  • Consult with a Specialist or Attorney: Consulting with an EDS specialist and a long term disability attorney can significantly improve your appeal’s chances of success.  They can help identify weaknesses in your initial claim, gather necessary evidence, and craft a persuasive appeal letter.  An attorney experienced in ERISA law is particularly valuable if your disability insurance is through your employer.

  • Submit a Comprehensive Appeal: Your appeal should include a detailed letter arguing against the denial reasons and highlighting any new evidence.  Be sure to adhere to the insurer’s guidelines for submitting an appeal and keep track of all deadlines.  Missing a deadline can result in the loss of your right to appeal.

  • Consider Legal Action if Necessary: If your appeal is denied and you believe the decision was unjust, consulting with your attorney about taking legal action is a step to consider.  Under ERISA, you may have the option to file a lawsuit against the insurer for benefits due.

Denials of disability claims for Ehlers-Danlos Syndrome often stem from misunderstandings of the condition or insufficient evidence.  By addressing these issues directly and bolstering your claim with comprehensive, detailed information, you can improve your chances of a successful appeal.  It is always advised to consult with a long term disability lawyer who can help you navigate the appeals process effectively.

How Can The Maddox Firm Prove My EDS Short or Long Term Disability Claim?

The Maddox Firm | Long Term Disability & ERISA

Navigating a short or long term disability claim due to Ehlers-Danlos Syndrome (“EDS”) can be daunting and complex.  At The Maddox Firm, we specialize in supporting individuals like you through this intricate process, ensuring that your claim is handled with the care and expertise it deserves.  Our goal is to help you receive the benefits you need to manage your condition.

Here are a few ways we help prove your EDS short or long term disability claim:

  • We Examine Your Policy and Assess Your Claim: Our first step is to thoroughly review your insurance policy to understand the specific coverage and limitations it entails.  By assessing your claim against the policy’s criteria, we tailor our approach to highlight how your EDS meets these requirements.  We pay special attention to the nuances of EDS, acknowledging the condition’s variability and the way it impacts your daily life and work capabilities.

  • We Handle All Communications with Your Insurance Company: Dealing with insurance companies can be overwhelming, especially when you’re managing a chronic condition like EDS.  We take this burden off your shoulders, managing all communications on your behalf.  This includes submitting your claim, negotiating with the insurer, and ensuring that your rights are protected throughout the process.

  • We Help You Obtain Evidence to Support Your Claim: Proving the impact of EDS on your ability to work is crucial.  We assist in gathering comprehensive evidence, including detailed medical records, statements from your healthcare providers, Functional Capacity Evaluations (“FCE”), neuropsychological evaluations, and vocational assessments.  We understand the specific challenges posed by EDS, such as chronic pain, joint instability, and fatigue, and we ensure that the evidence reflects the full extent of your disability.

  • We Handle Appeals and Litigation: If your claim is unjustly denied, we’re prepared to take the next steps.  We meticulously prepare and submit your appeal, bolstering your case with additional evidence and a comprehensive written rebuttal.  Should it come to litigation, you can count on our legal expertise to advocate for your rights in court.  We understand the legal intricacies of ERISA, enabling us to navigate the legal system effectively on behalf of EDS claimants.


A short term disability or long term disability claim can be a complicated process. If you need help during the claims process, with appealing a claim denial, or with litigating a final adverse short term or long term disability decision, The Maddox Firm can help.  The experienced team at The Maddox Firm will examine your insurance policy, correspondence from your insurance company, medical records, and any other relevant documentation in order to give you personalized guidance on how we can help you win your Ehlers-Danlos Syndrome short and/or long term disability claim. Our New Jersey and New York long term disability attorneys help clients nationwide.





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