Disclaimer: The process of applying for disability benefits with VHL disease can vary based on individual circumstances, medical history, and location. This post provides general information and resources but should not be considered legal or medical advice. We encourage individuals to consult with a qualified professional, such as a disability attorney or benefits specialist, for guidance specific to their situation.
“I was diagnosed 25 years ago and have been through 12 major surgeries. I came close to dying due to one of my tumors and spent 3 weeks in the hospital. I finally came to the decision that it was time to stop working and apply for Social Security Disability… I couldn’t fight the [insurance] battles while working. Going to work was risking my life.”
– Cathy, 60, VHL Patient, receiving SSDI from New York
Applying for disability benefits with VHL disease can be a complex and sometimes overwhelming process. Because symptoms and disease progression vary widely from person to person, eligibility and approval depend on individual medical history, functional limitations, and specific program requirements. Understanding the process, gathering the right documentation, and knowing what to expect can help make navigating disability applications smoother.
Application criteria varies dramatically state to state, and there are a variety of ways to apply for disability support including:
- Disability insurance
- Supplemental Security Income (SSI)
- Social Security Disability Insurance (SSDI)
In this article, we’ll outline key steps, important considerations, and resources that may assist you along the way. However, it’s important to remember that this information is for general guidance only and should not replace advice from a qualified disability attorney or benefits specialist.
Gather All Medical Information
This is the absolute foundation of any successful disability claim. You need to meticulously gather and present medical evidence that clearly demonstrates how VHL and its manifestations impair your ability to work and perform daily activities. This includes:
Diagnostic Reports: Genetic testing confirming VHL, imaging reports (MRIs, CT scans) showing tumors in various organs (brain, spinal cord, kidneys, pancreas, adrenal glands, eyes, inner ear), and pathology reports from any biopsies or surgeries.
Specialist Reports: Detailed reports from all specialists involved in your care (neurologists, oncologists, nephrologists, ophthalmologists, endocrinologists, etc.). These reports should specifically describe:
– Diagnosed conditions: Clearly state each VHL-related condition (e.g., renal cell carcinoma, hemangioblastomas, pheochromocytoma).
– Severity of symptoms: Don’t just list diagnoses; describe the impact of symptoms like pain, fatigue, vision problems, balance issues, cognitive difficulties, endocrine imbalances, etc. Be specific about frequency, duration, and intensity.
– Treatment history and response: Document all treatments (surgeries, radiation, medications, therapies) and how you’ve responded. Highlight any ongoing treatments, side effects, and limitations resulting from treatments.
– Prognosis: The potential for recurrent tumors and complications needs to be highlighted, especially if it impacts long-term work capacity.
Functional Capacity Evaluations (FCEs): If applicable, these can objectively assess your physical and cognitive abilities and limitations, providing concrete data to support your claim.
Statements from your medical team: Ask your doctors to write letters specifically addressing your functional limitations and how VHL prevents you from working. These should be detailed and directly relate your medical condition to disability criteria.
Highlight your functional limitations
Clearly Demonstrating Functional Limitations and Inability to Engage in Substantial Gainful Activity (SGA): Disability isn’t just about having a diagnosis; it’s about how that diagnosis prevents you from working. You need to articulate and demonstrate how VHL impairs your ability to perform the essential functions of any job.
“The SSA disability folks, repeatedly, made it very clear to me that the VHL diagnosis itself was not enough to qualify.”
– Nancy, 37, receiving SSI from Florida.
Physical Limitations: Address limitations in:
– Strength and stamina: Fatigue, pain, muscle weakness, inability to lift, carry, stand, or sit for extended periods.
– Mobility and balance: Dizziness, balance issues, coordination problems, difficulty walking, climbing stairs, using fine motor skills, especially if hemangioblastomas affect the cerebellum or spinal cord.
– Sensory limitations: Vision loss, hearing loss, chronic pain, numbness, tingling, which can impact job performance and safety.
– Cognitive Limitations: VHL, particularly hemangioblastomas in the brain, can cause cognitive impairments:
– Executive function: Problems with planning, organization, problem-solving, decision-making, and multitasking.
– Attention and concentration: Difficulty focusing, staying on task, and resisting distractions.
– Memory: Short-term and long-term memory problems.
– Processing speed: Slowed thinking and reaction time.
Impact on Daily Living Activities: While not the primary focus of disability determination (which is work capacity), demonstrating difficulties with activities of daily living (ADLs) like personal care, household chores, or social interactions can further illustrate the severity of your limitations and support your claim.
Document Past Work History and Attempts to Work: Explain your work history and why you can no longer perform your previous jobs or any type of sustained work. If you have attempted to work since your VHL diagnosis, describe these attempts and why they were unsuccessful due to your limitations.
Explain how VHL can fluctuate: VHL is a complex genetic disorder with highly variable expression. It’s crucial to emphasize these aspects in your application:
– Multisystemic Nature: Explain that VHL affects multiple organ systems and that symptoms and limitations can stem from tumors in various locations. Don’t just focus on one tumor type; illustrate the cumulative impact of VHL throughout your body.
– Fluctuating Symptoms: VHL symptoms can wax and wane, and new tumors can develop over time. Explain that your condition is not static and that limitations may vary from day to day but are consistently present and disabling in the long term.
– Progressive Nature: Emphasize that VHL is a lifelong condition with the potential for new tumors and complications to develop throughout your life. This long-term, progressive nature is a critical factor in disability considerations.
– Individualized Impact: Stress that VHL affects each person differently. Even within the same family, the severity and type of tumors can vary. Your unique presentation of VHL and its impact on your functional abilities is what matters for your disability claim.
Understand Disability criteria and terminology: Familiarize yourself with the specific disability criteria used by the relevant disability agency (e.g., Social Security Administration in the US). While there isn’t a listing specifically for “VHL Disease,” your VHL-related conditions may meet or medically equal existing listings. Focus on listings relevant to:
– Neurological Disorders (if hemangioblastomas are a major issue): Listings related to stroke, epilepsy, multiple sclerosis, or other neurological impairments, especially if you have ataxia, cognitive dysfunction, vision problems, or motor deficits due to brain or spinal cord hemangioblastomas.
– Cancer: Listings related to different types of cancer, especially if you have renal cell carcinoma or pheochromocytoma that have metastasized or cause significant functional limitations due to treatment side effects or the disease itself.
– Endocrine Disorders (if pheochromocytoma or pancreatic neuroendocrine tumors are present): Listings related to endocrine disorders, especially if hormone imbalances cause significant fatigue, weakness, or other debilitating symptoms.
– Vision Impairments (if retinal hemangiomas are a major issue): Listings related to vision loss, especially if you have significant visual acuity or field of vision deficits due to retinal hemangioblastomas.
– Musculoskeletal System (if you experience significant pain or mobility issues): Listings related to musculoskeletal disorders if you have chronic pain or limitations impacting mobility due to VHL-related tumors or complications.
– “Medical-Vocational Allowance”: If you don’t strictly meet a specific listing, you may still qualify for disability based on a “medical-vocational allowance.” This considers your medical impairments, age, education, and work history to determine if you are capable of performing any sustained gainful activity. This is often relevant for VHL, where the combination of various symptoms may prevent work even if no single symptom perfectly matches a listing.
Know the process & consider professional support: The disability application process can be complex and bureaucratic. It’s essential to:
– Start the application process as soon as you recognize you are unable to work due to VHL. Don’t delay, as disability benefits may not be retroactive to the date of onset if you wait too long.
– Understand the specific requirements and procedures of the disability agency in your region or country.
– Be organized and meticulous in gathering and submitting all required documentation. Keep copies of everything. Don’t assume that medical professionals will provide information directly to Disability case workers on your behalf.
– Be prepared for potential denials and appeals. Many, if not most, initial applications are denied. Don’t be discouraged; an appeal is often a necessary step.
If you need to, you can always seek professional help:
– VHL Alliance (VHL.org): Connect with us at the VHL Alliance. We can provide resources, support, and potentially connect you with others who have successfully navigated the disability process with VHL.
– Disability Lawyer or Advocate: Consider consulting with a disability lawyer or advocate who specializes in complex medical cases. They can provide invaluable assistance with navigating the process, gathering evidence, presenting your case effectively, and representing you in appeals if necessary.
– Support groups and online communities: Organizations like ALLSUP can help you navigate the SSDI application process, with minimal up front costs..
By carefully considering these five points and diligently preparing your application you can increase your chances of successfully obtaining disability benefits when VHL prevents you from working. Remember to be persistent, patient, and proactive throughout the process! We are here to help.
Thank you to Josh Mann, MPH and to the individuals with VHL receiving disability benefits for the insights for this article.
This Article was brought to you, in part, by Merck
