Von Hippel-Lindau and Social Security Disability

Von Hippel-Lindau (VHL) disease is a rare genetic disorder in which abnormal cells grow in various locations, though the blood vessels of the eyes, central nervous system, adrenal glands and kidneys are among the most common locations. Tumors that develop can be benign or cancerous. The symptoms of the disease different greatly from patient to patient, but can include headaches and vision problems, muscle weakness and difficulty maintaining balance.

Malignant VHL that is resistant to treatment, is inoperable, or which recurs following initial treatment, can qualify you for disability benefits. Benign forms of the disease can as well, if they result in such severe limitations that they prevent you from working for a period of one year or are expected to do so.

Medically Qualifying with Von Hippel-Lindau

Whether you can be approved for Social Security Disability (SSD) benefits with VHL depends on how severe its effects are on your everyday abilities. To make a determination, the SSA must review your application and medical records and determine whether the condition is severe enough to prevent gainful employment.

The first step they take is to review an application in comparison with listing in the Blue Book, which is a manual of impairments and the evidence necessary for proving severe disability with each.

There is no listing for VHL in the Blue Book, but the SSA may be able to “match” your application to another listed condition. If your VHL is equal in severity to one of these listings, you will be granted benefits. Comparable listings may include:

  • Section 2.00 – vision loss or impairment
  • Section 6.00 – for kidney impairment or renal failure
  • Section 9.00 – for adrenal gland and other endocrine disorders
  • Section 12.00 – for cancerous tumors
  • Section 11.00 – tumors in the central nervous system and neurological complications

Some medical conditions are so severe that the SSA will review applications as quickly as possible and grant benefits with minimal medical evidence. The program through which this occurs is known as Compassionate Allowances (CAL). Inoperable kidney cancer is among these conditions.

Even when your VHL does not meet or match a listing or qualify for consideration under the CAL program, you may still be able to receive disability benefits. At this stage, the SSA performs what is known as a residual functional capacity (RFC) analysis.

Through the RFC evaluation, the SSA determines whether your illness and symptoms prevent you from performing everyday tasks, including typical job functions. They then determine if your limitations are severe enough to prevent you from working in any job for which you would otherwise be qualified given your work experience, education, and training.

If they find you cannot reasonably be expected to perform any job, even a light work or sedentary position, then you’ll be granted benefits.

Getting Help with Your Claim

Medical evidence is the key to a strong disability claim. As such, you want to ensure you provide the SSA with copies of as many of your medical records as possible at the time that you apply. You can also follow up after submitting your application by giving copies of your records to your local SSA office and later to the disability determinations analyst that is assigned to your claim.

There are two programs for which you may qualify with VHL:

  • Supplemental Security Income (SSI), which is a need-based program available to qualified individuals with very limited financial resources

  • AND

  • Social Security Disability Insurance (SSDI), which is only available to qualified, disabled workers who have sufficient work history or work credits to meet eligibility criteria.

The SSDI application can be completed online or at the local SSA office, but for SSI you must apply in person. To schedule an appointment, call 1-800-772-1213.

Any application for benefits can be strengthened with the assistance of an experienced Social Security advocate or attorney, but it is even more important to consider seeking assistance when applying for disability for a condition for which the SSA has no listing in its Blue Book.

Find Out If I Qualify for Benefits!