May has been named National Neurofibromatosis Month in the US. The purpose of National Neurofibromatosis Month is to raise awareness of the disease and to raise funding for research into potential cures or treatments.
What is Neurofibromatosis?
There are actually three distinct genetic disorders which are characterized as Neurofibromatosis. These include:
- NF1 (also called von Recklinghausen’s disease and peripheral NF) causes spots of pigmentation on the skin. These are sometimes called café-au-lait spots because their color resembles coffee with cream. This is the most common form of NF and is known to cause heart defects, bone abnormalities, and skeletal deformities. In 60% of cases, it also causes learning disabilities.
- NF2 causes the development of tumors on the nerves, specifically nerves affecting the brain and hearing. They may also develop tumors on the spinal cord in some cases. Loss of hearing and deafness are common effects of NF2.
- Schwannomatosis. Unlike other forms of NF, Schwannomatosis is not usually inherited genetically. Its symptoms are similar to NF2, except that it doesn’t cause hearing loss or deafness. Those who suffer from Schwannomatosis often experience chronic pain caused by the tumors.
Neurofibromatosis in all of its forms is generally diagnosed early in life.
Can I Apply for Social Security Disability Benefits with Neurofibromatosis?
If you or your dependent has neurofibromatosis, you may qualify for Social Security disability benefits. While the Social Security Administration (SSA) does not list the condition specifically, the SSA will consider many of the symptoms typically suffered by those who have neurofibromatosis.
Because the condition typically manifests at a young age, those who apply for disability benefits based on neurofibromatosis will typically be filing for disability on their dependents’ behalf. Having a dependent child with the condition may qualify you for SSI if you can demonstrate that the symptoms (specifically learning disabilities and hearing loss) qualify as disabling conditions.
If you are an adult with neurofibromatosis, you will need to show that your condition makes it unreasonable for the SSA to expect you to maintain any kind of substantial gainful activity. Again, since there is not a separate listing for the condition in the SSA’s Blue Book, you will need to show that the total of your symptoms makes it impossible for you to work or be trained to work at any employment which is available across the country. These are exacting standards, and those who are applying for disability benefits should consider seeking the help of a Social Security disability lawyer. A disability attorney will know better than anyone (doctors included) what kind of information the SSA will need to see before they are likely to approve a disability claim based on neurofibromatosis.
Because NF tends to lead to multiple symptoms, some who suffer from it will qualify for Social Security disability benefits even if they don’t have any single symptom severe enough to qualify for SSA disability. This is because the SSA considers how your combination of symptoms affects your ability to find and maintain employment.