Pelizaeus-Merzbacher Disease and SSA Disability

Each year there are millions of disability claims filed with the Social Security Administration (SSA). While it is true that the majority of these claims are filed by disabled adults who are no longer able to maintain full-time work activity, some are filed on the behalf of children who have been born with severely debilitating medical conditions. When a child is diagnosed with such a condition, it can put extreme financial stress on the child’s family. Oftentimes a parent will need to leave work in order to attend to the needs of the child. In some cases, in-home professional care is necessary. This can leave the family struggling financially and the bills begin to spiral out of control. Fortunately, in some cases, Social Security Disability benefits are able to help. For families who have had a child who has been diagnosed with the connatal form of Pelizaeus Merzbacher Disease, there is light on the horizon. The condition is being added to the SSA’s list of Compassionate Allowances conditions, meaning that those who suffer from the condition may qualify for disability benefits in a matter of weeks rather than having to wait months or years for benefits to begin. If your child has been diagnosed with this condition, the following information will help you understand how your child may qualify for benefits more quickly and with less hassle.

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

Pelizaeus-Merzbacher disease, also referred to as PMD, is a rare genetic disorder that impacts the central nervous system of the body. The disease is one of many that belong to a group of genetic disorders referred to as leukodystrophies. Leukodystrophies are disorders that affect the growth of the myelin sheath that protects the central nervous system. Another type of Leukodystrophy that qualifies for a compassionate allowance is Orthochromatic Leukodystrophy with Pigmented Glia

The symptoms of Pelizaeus-Merzbacher Disease can vary from one individual to another and some forms of the disorder are more severe. The connatal form is the most severe form of Pelizaeus Merzbacher Disease. This form of the disease accounts for approximately 10 to 15 percent of all PMD diagnoses and the condition is more prevalent among males.

The connatal form of PMD is present at birth with symptoms such as hypotonia, respiratory distress, difficulty feeding and seizures being common. Children who are born with this form of the disease will also experience significant motor impairment and cognitive delays. These individuals will not be able to walk and have limited language skills, if any at all. Most of the children who are born with the connatal form of PMD will not survive beyond the second decade of life.

The connatal form of Pelizaeus-Merzbacher Disease is inherited in an x-linked inheritance pattern. The disease is caused by 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 and the mutation of this gene affects the growth of the sheath.

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

If you are filing a disability claim based on a diagnosis of the connatal form of PMD it is important that you prove that your child’s condition is so severe that it meets the criteria of this Compassionate Allowances listing. This means properly filling out all of the disability application paperwork and providing sufficient medical evidence.

When you fill out your child’s disability claim forms, you will need to make sure that you answer all of the questions asked in detail. Yes or no answers will not suffice. It is your job to be as specific as possible when providing the answers the SSA is looking for. In addition, you will want to provide medical records that support the statements you make on the application paperwork. Your child’s medical history, lab results and written statements by treating physicians can have a significant impact on the outcome of your child’s Social Security Disability claim.

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

If your child has been diagnosed with the connatal form of Pelizaeus-Merzbacher Disease and you wish to obtain Social Security Disability benefits from the SSA, you should consider seeking the help of a disability attorney prior to submitting your child’s claim for disability benefits. When you work with a disability attorney the attorney you hire can ensure that your disability claim forms are filled out properly, that you have enough objective medical evidence to support your claim and that your claim is presented in such a way that the SSA understands the severity of your child’s condition and how it qualifies for processing under the Compassionate Allowances guidelines.

Fortunately, disability attorneys work on a contingency basis, collecting 25 percent of the back pay that you receive from the SSA. This means that the services of an attorney do not have to add to your financial stress.