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Phenylketonuria (PKU) and SSA Disability Benefits

According to, Phenylketonuria also known as PKU is an “inherited disorder that increases the levels of a substance called phenylalanine, which is the building block of proteins, in the blood.” This condition must be treated appropriately or it may cause the phenylalanine found in the blood to increase to harmful levels.

[caption id="" align="alignright" width="240" caption="PKU cake (Photo credit: allegr0)"]PKU cake[/caption]

This condition, like many others, can range from the mild to severe. It is frequently not identified until babies are a few months old and failure to properly identify and treat it may leave young children permanently disabled with seizures, limited intelligence, mental health disorders or other behavioral issues. Common but mild side-effects can include a musty smell, low birth weight, heart defects, large head size or light skin and hair.

In the United States, PKU occurs in 1 in 10,000, births but early detection and treatment generally eliminates the severe symptoms that can occur in other regions of the world. Parents with a baby with this condition should follow all the dietary instructions provided by their medical doctor.

Winning SSI or SSDI disability benefits for Phenylketonuria (PKU)

The SSA has two methods for determining disability for claimants with PKU: meeting a listing on the SSA listing of impairment or proving that a claimant cannot work due to their condition. This is done through a medical vocational allowance.

The SSA has created what they call the SSA listing of Impairments. Children’s conditions are evaluated under Childhood Listings Part B. Adults who have PKU will have their condition evaluated under the SSA Listing of Impairments Part A.

There is not a specific listing for Phenylketonuria (PKU)  in the SSA Listing of Impairments so claimants who hope to win SSI or SSDI through a listing will have to prove that their condition is as severe as a condition (and the symptoms) of a condition which is listed. If, for instance, your condition causes seizures, it could be possible to evaluate it under 11.00 Neurological (for adults).

Winning SSDI or SSI Benefits through a medical vocational allowance

Whether or not you can work will depend on the severity of your PKU symptoms. Because this condition generally can be controlled with the proper diet it will be VERY difficult to prove that it is so severe that you are unable to work.

Exceptions will exist, however. As mentioned above, claimants may have severe symptoms which could limit their ability to work. For example claimants who have a severe mental health condition due to this condition could prove that they cannot work  sedentary work

. Although they would have the physical capacity to sit and work, because of their severe mental limitations it would be difficult for them to focus and concentrate to complete some types of “desk” jobs.

Given the difficulty claimants can face if their Phenylketonuria (PKU) does not meet or exceed a listing, claimant’s who are attempting to win SSI or SSDI benefits through a medical vocational allowance frequently hire a disability lawyer for help. Disability lawyers can review your medical records and help you determine if you have enough information to prove you do not have the residual functional capacity to work.


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