Long Term Disability and Wilson's Disease: What You Need to Know

Wilson’s Disease is a rare genetic condition that can severely impact your ability to work and maintain financial stability.  By causing copper to build up in the body, the disease damages the liver, brain, and other organs, leading to symptoms like severe fatigue, tremors, and cognitive impairments.  These symptoms can make it difficult—or even impossible—to perform essential job tasks.

Securing long term disability benefits for Wilson’s Disease can be challenging.  Insurers often question the severity of symptoms or argue that you could still work in another capacity.  Below we’ll discuss how to demonstrate to your insurer the full impact of your condition on your ability to work, as doing so is critical to building a strong claim.

Is Wilson’s Disease considered a disability?

Yes, Wilson’s Disease can be considered a disability if your symptoms prevent you from working.  Wilson’s Disease is a rare genetic disorder that causes the body to accumulate excessive amounts of copper.  Normally, the liver processes and eliminates copper through bile, but in people with Wilson’s Disease, the liver is unable to do so effectively.  As a result, copper builds up in the liver, brain, eyes, and other vital organs, leading to serious and potentially life-threatening complications if untreated.

The physical symptoms of Wilson’s Disease can include:

• • Liver dysfunction: Symptoms may include jaundice, abdominal pain, swelling, and impaired liver function, which can lead to severe discomfort, reduced stamina, and other systemic health problems.
  • Severe fatigue: Persistent exhaustion that makes it difficult to maintain energy throughout the day, interfering with the ability to perform tasks or concentrate on work for extended periods.
  • Muscle stiffness and tremors: These symptoms can make movement difficult, interfere with fine motor skills, and cause challenges in performing tasks requiring precision, such as typing or using tools.
  • Difficulty with coordination: Impaired balance and motor skills can lead to problems walking, handling objects, or safely navigating work environments.

The cognitive and neurological symptoms may include:

• • Memory problems: Difficulty retaining or recalling important information, which can disrupt task management and decision-making.
  • Slurred speech: Impairment in clear verbal communication, which may affect interactions with colleagues, clients, or customers.
  • Mood disorders: Conditions such as depression, anxiety, or irritability, which can cause emotional instability and strain professional relationships.
  • Personality changes: Shifts in behavior, such as increased apathy, impulsiveness, or erratic decision-making, which can make adapting to professional demands challenging.

These symptoms can be disabling across a variety of professions.  For instance, a surgeon or dentist may find tremors and coordination issues incompatible with their job’s precision requirements.  An attorney or accountant may struggle to meet deadlines or manage complex tasks due to memory problems or mental fatigue.  Even in less specialized roles, severe fatigue, mood instability, or physical impairments can significantly disrupt productivity and reliability.

By affecting physical, cognitive, and emotional functioning, Wilson’s Disease can prevent you from performing essential job duties, qualifying it as a disabling condition.

Can I receive long term disability for Wilson’s Disease?

Yes, you may qualify for long term disability for Wilson’s Disease, depending on your policy’s definition of disability.  Understanding how these definitions apply to your situation is essential in evaluating your eligibility for benefits.

Long term disability policies typically define disability under one of three main categories: own occupation, any occupation, or a hybrid definition.

• • Own occupation: This definition focuses on your ability to perform the duties of your specific job or occupation.  If Wilson’s Disease prevents you from continuing in your current role, even if you might be capable of performing a different type of work, you may qualify for benefits under this standard.  For example, a surgeon experiencing tremors and coordination issues from Wilson’s Disease may no longer be able to operate, even though they might technically be capable of working in a less demanding role.  Own occupation policies are generally more favorable to claimants.
  • Any occupation: This is a more restrictive definition.  To qualify for benefits, you must demonstrate that Wilson’s Disease prevents you from performing the duties of any occupation for which you are reasonably qualified by your education, training, or experience.  For instance, if your symptoms are so severe that you cannot perform any type of work, including desk jobs or less physically demanding positions, you may meet this standard.  However, this definition makes it harder to secure benefits, especially if you have transferable skills or less severe symptoms.
  • Hybrid definition: Many policies use a combination of the “own occupation” and “any occupation” standards.  Typically, you must initially meet the own occupation standard to qualify for benefits, but after a specified period (e.g., 24 months), the policy shifts to the more stringent any occupation standard.  For example, a policy might allow a professional suffering from severe fatigue and tremors to receive benefits during the first two years when they cannot perform their own job, but later require proof that these symptoms also prevent them from working in any role for which they are reasonably qualified.

It’s important to carefully review your policy’s language to understand which definition applies and what evidence is required to support your claim.  If you are unsure about your policy terms or encounter difficulties with your claim, consulting an experienced ERISA long term disability attorney can help clarify your options and improve your chances of securing benefits.

How do I prove Wilson’s Disease is disabling?

To prove that Wilson’s Disease is disabling for the purposes of long term disability benefits, you will need to provide comprehensive medical and vocational evidence that clearly demonstrates how your condition limits your ability to perform work.  Insurers typically require detailed proof of both the physical and cognitive impairments caused by Wilson’s Disease, as well as evidence of how these impairments prevent you from meeting the demands of your occupation or any other reasonable work.

Here’s the evidence you should include in your claim:

• • Liver function tests: Abnormal results, such as elevated liver enzymes or evidence of cirrhosis, can demonstrate the impact of copper buildup on your liver.
  • Serum ceruloplasmin levels: Low levels of ceruloplasmin are a hallmark of Wilson’s Disease and help confirm the diagnosis.
  • 24-hour urinary copper tests: These tests measure copper excretion and can show the extent of copper dysregulation in your body.
  • Genetic testing: Identification of mutations in the ATP7B gene, which is associated with Wilson’s Disease, provides definitive diagnostic confirmation.
  • Imaging studies: Brain imaging, such as MRI or CT scans, may show neurological damage caused by copper deposition, including abnormalities in the basal ganglia.
  • Liver biopsies: In some cases, a biopsy may be used to confirm copper accumulation in the liver when other diagnostic tests are inconclusive.
  • Office Visit Notes: These records from your treating providers should document symptoms such as severe fatigue, muscle stiffness, tremors, poor coordination, or cognitive impairments, and how these affect your day-to-day functioning.
  • Reports from Specialists: Insurers often place significant weight on statements from treating physicians, especially specialists such as hepatologists, neurologists, or movement disorder specialists.  These reports should detail the nature and severity of your condition, your response to treatment, and your prognosis.  For instance, a neurologist can provide insights into motor impairments like tremors or slurred speech, while a hepatologist can explain how liver damage contributes to systemic symptoms.
  • Functional Capacity Evaluation (“FCE”): An FCE objectively measures your physical capabilities in relation to work-related tasks.  This includes assessing strength, endurance, dexterity, and mobility.  If symptoms such as tremors, stiffness, or poor coordination limit your ability to perform essential job duties—such as standing, lifting, typing, or using tools—an FCE provides measurable evidence of these restrictions.
  • Neuropsychological Evaluation: This evaluation is critical for documenting the cognitive impact of Wilson’s Disease.  It assesses memory, attention, executive functioning, decision-making, and problem-solving skills.  Cognitive impairments can significantly impact jobs requiring mental acuity, multitasking, or sustained focus, and this evidence helps demonstrate how these limitations prevent you from performing complex tasks.
  • Vocational Assessment: A vocational expert can evaluate how your physical and cognitive impairments affect your ability to perform your current job or transition to other work.  This assessment considers your education, skills, training, and the specific demands of your occupation.  For example, if tremors or cognitive difficulties prevent you from fulfilling essential duties, the vocational assessment will clarify why you cannot reasonably perform other work.
  • Electromyography (“EMG”): May be used to evaluate motor nerve function if muscle or movement disorders are a prominent symptom.
  • Electroencephalogram (“EEG”): Can help identify any seizure activity or brain dysfunction caused by neurological damage.
  • Ophthalmologic Exam: An eye exam identifying Kayser-Fleischer rings, a hallmark of Wilson’s Disease, can strengthen diagnostic evidence.
  • Symptom Diaries and Personal Statements: Your own account of how Wilson’s Disease affects your daily life and work can provide valuable context.  Document specific examples, such as fatigue that prevents you from working a full day, tremors that make it difficult to write or type, or cognitive lapses that impact your ability to complete tasks accurately and on time.

Providing this extensive medical and vocational evidence creates a clear, comprehensive picture of how Wilson’s Disease prevents you from working.  If you need assistance compiling the necessary documentation or navigating the claims process, an ERISA attorney experienced in disability claims can help ensure that your claim is as strong as possible and effectively demonstrates the disabling nature of your condition.

Can I get long term disability for Wilson's if I am receiving treatment?

Yes, you can qualify for long term disability benefits for Wilson’s Disease even if you are receiving treatment.  Most long term disability insurance policies include an “appropriate treatment” clause, which requires you to seek and comply with reasonable medical care for your condition to remain eligible for benefits.  This means you must follow your doctor’s recommendations for managing Wilson’s Disease, such as taking prescribed medications, undergoing chelation therapy, or adhering to dietary restrictions to reduce copper intake.  However, even when you are following treatment, you can still qualify for benefits if your symptoms prevent you from working.

Treatment for Wilson’s Disease, while essential, does not always resolve the symptoms that make it difficult to perform job duties.  For example, damage caused by copper accumulation in the brain or liver may result in permanent impairments, such as persistent tremors, cognitive deficits, or chronic fatigue.  Additionally, the treatment itself can sometimes cause side effects that further impact your ability to work.  Medications like penicillamine or trientine, commonly used for chelation therapy, can lead to side effects such as joint pain, skin rashes, or gastrointestinal discomfort. These side effects may exacerbate your existing symptoms, making it even harder to concentrate, move comfortably, or maintain productivity at work.

Insurers may attempt to deny your claim by arguing that treatment should allow you to return to work.  To counter this, it’s critical to provide evidence showing that your symptoms persist despite treatment or that treatment side effects contribute to your inability to perform your job.  Statements from your treating physicians, detailing the limitations caused by both the disease and its treatment, can be instrumental in demonstrating that you meet your policy’s definition of disability.  This ensures that you remain eligible for benefits even while actively managing your condition.

Why do insurers deny Wilson’s Disease long term disability claims?

Insurers often deny long term disability claims for Wilson’s Disease for a variety of reasons, many of which are related to insufficient documentation, misinterpretation of symptoms, or policy-specific requirements.  It’s important to understand the common reasons for denial so that you can proactively address these issues in your claim.

Common reasons insurers deny Wilson’s Disease long term disability claims include:

• • Lack of sufficient medical documentation: If your medical records don’t provide clear evidence of the diagnosis, progression, and disabling symptoms of Wilson’s Disease, insurers may claim that there’s not enough proof that the condition is severe enough to prevent you from working.
  • Failure to meet policy definitions of disability: Insurers may argue that your condition does not meet the specific definition of disability outlined in your policy.  They may claim that you can still perform the duties of your job or another occupation despite your symptoms.
  • Discrepancies between medical reports and claim forms: Inconsistent information between your physician’s statements, medical evaluations, and the forms you submitted for the claim can lead to a denial.  Insurers may challenge the validity of the claim if they perceive any inconsistencies.
  • Underestimating cognitive and psychiatric symptoms: Insurers often undervalue the cognitive and psychiatric effects of Wilson’s Disease, such as memory loss, depression, or anxiety.  If these symptoms are not thoroughly documented and linked to your inability to work, the insurer may reject your claim based on their perception that the condition is not disabling.
  • Lack of objective evidence: Insurance companies often look for objective proof, such as test results and evaluations (e.g., Functional Capacity Evaluations or Neuropsychological Evaluations).  If this evidence is not included, they may deny the claim due to the absence of measurable limitations.
  • Failure to comply with treatment: If your insurer believes you are not following prescribed treatments or therapies, they may deny your claim, arguing that your symptoms could improve with proper management.

Understanding these common pitfalls can help you strengthen your claim for long term disability benefits.  If your claim is denied, it’s important to consult with an experienced long term disability attorney who can help you appeal the decision and gather the necessary documentation to support your claim.

How can an attorney help with my Wilson’s Disease long term disability claim?

An attorney can be an invaluable resource when pursuing a long term disability claim for Wilson’s Disease.  Insurers often scrutinize these claims by questioning the severity of symptoms or their impact on your ability to work.  At Riemer Hess, we have been securing disability benefits for our clients for over 30 years, helping individuals with complex medical conditions like Wilson’s Disease overcome these hurdles.

We understand the unique challenges posed by this rare condition, including its fluctuating symptoms and the interplay between physical and cognitive impairments.  Our firm is experienced in countering insurer tactics, such as minimizing the impact of fatigue, neurological dysfunction, or cognitive deficits.  We work closely with you to build a compelling case that demonstrates how your Wilson’s Disease symptoms prevent you from performing your job duties.

To strengthen your claim, Riemer Hess can arrange critical evaluations to provide objective evidence of your limitations.  We can coordinate Functional Capacity Evaluations (“FCE”) to document physical impairments such as tremors, poor coordination, or muscle stiffness, and neuropsychological evaluations to assess cognitive issues like memory loss, difficulty concentrating, or executive dysfunction.  In addition, we may refer you to vocational experts who can evaluate how your physical and cognitive impairments affect your ability to perform your occupation or transition to another role.  By combining these assessments with detailed medical evidence, we create a robust case that clearly outlines the disabling nature of Wilson’s Disease.

Riemer Hess also works directly with your treating physicians and specialists to ensure they provide detailed statements that support your claim.  These statements may address how your condition limits your ability to meet the demands of your job, why accommodations or treatments cannot fully mitigate your limitations, and your long-term prognosis.  Our proactive approach includes collecting comprehensive medical evidence, organizing expert evaluations, and preemptively addressing common insurer arguments, such as claims that your symptoms are manageable or that you can work in another capacity.

With over 30 years of experience, Riemer Hess is dedicated to maximizing your chances of securing the long term disability benefits you need, providing informed guidance and support every step of the way.