Compassionate Allowance: Pelizaeus-Merzbacher Disease

Of the millions of disability claims filed each year with the Social Security Administration (SSA), the majority are filed by disabled workers who are no longer able to maintain employment due to the limitations their disability places on them. In some cases, however, SSDI and/or SSI claims are filed by parents of children who are born with severely debilitating conditions. When a child is born with a severe disability, it can put extreme financial strain on the child’s family. Oftentimes a parent must leave the workplace in order to accommodate the needs of the child or must incur the expense of in-home care for the child’s needs. Fortunately, Social Security Disability benefits may be able to help. While it takes most applicants years before seeing their first disability payment from the SSA, some applicants who qualify for claim processing under the SSA’s Compassionate Allowances guidelines can qualify for benefits in a matter of weeks. Recently the SSA has added the classic form of Pelizaeus-Merzbacher Disease to the list of conditions that qualify for Compassionate Allowances processing. If your child has been diagnosed with this condition, the following information will help you understand how your child may qualify for disability benefits from the SSA in a timely manner.

Pelizaeus-Merzbacher Disease (Classic Form) - Condition and Symptoms

Pelizaeus-Merzbacher disease, also known as PMD, is a very rare disorder that affects the body’s central nervous system. The disease belongs to a group of genetic disorders that are referred to as leukodystrophies. These disorders affect the growth of the myelin sheath on the central nervous system.

The symptoms of Pelizaeus-Merzbacher Disease can vary from case to case. The most common symptoms include rapid, involuntary motion of the eyes, low muscle tone, impaired motor ability, impaired speech, tremor, lack of coordination, general weakness, spasticity in the limbs, progressive shrinking of the muscles, progressive deterioration of mental functions, convulsions and skeletal deformations. Some patients may need a feeding tube due to difficulty eating.

The classic form of Pelizaeus-Merzbacher Disease is inherited in an x-linked inheritance pattern. It is most often due to duplications of genes but can also occur due to mutations of the PLP1 gene, causing hypomyelination of the central nervous system. This is because the PLP1 gene encodes the proteolipid protein known as PLP. This is the protein that is most abundant in the myelin sheath of the central nervous system. The mutation of the gene affects the growth of the sheath.

Filing for Social Security Disability with Pelizaeus-Merzbacher Disease (Classic Form)

When filing a disability claim based on a diagnosis of Pelizaeus-Merzbacher Disease, you must prove to the SSA that your child’s condition is so severe that it meets the SSA’s Compassionate Allowances requirements under this particular listing. You can accomplish this by properly filling out the disability claim forms you receive from the SSA. When filling out these forms, make sure all of the answers are given with very clear and detailed explanations. Also make sure you provide the SSA with enough medical evidence to support your claim and the statements that you make on your disability claim forms.

In the case of the classic form of Pelizaeus-Merzbacher Disease, you will want to provide medical records that show a complete medical history, lab results and written statements from treating physicians in order to support your claim. All of these records will be considered by the SSA’s adjudicator when processing your child’s Social Security Disability Claim so you should provide as much documentation as possible.

Pelizaeus-Merzbacher Disease (Classic Form) and Your Social Security Disability Case

If your child has been diagnosed with Pelizaeus-Merzbacher Disease and you wish to obtain Social Security Disability benefits from the SSA, you may want to enlist the help of a disability attorney prior to submitting your claim for disability benefits. By working with a disability attorney before you actually file your child’s disability claim, you can ensure that your disability claim forms are filled out properly, that you have enough objective medical evidence to support your claim for benefits and that your claim is presented in such a way that the SSA understands the severity of your child’s condition. This will also help the SSA understand how the claim qualifies for processing under the Compassionate Allowances guidelines.