PKU stands for Phenylketonuria, a debilitating genetic disease that can drag down an entire family in the treatment of the condition. Social Security recognizes the harm this disease inflicts on the individuals that suffer from it as well as for family caregivers that are needed to spend time and resources in supporting their loved ones.


What is Phenylketonuria

This disease has been well known for quite awhile in our society, as anyone that has consumed a diet drink containing aspartame can likely attest to having read the name on the soft drink can. All products containing aspartame can be deadly to someone suffering from phenylketonuria, as the disease makes it difficult for the human body to break down a specific amino acid contained therein. Phenylketonuria specifically is an inherited biological trait that, when present, causes a failure in the body to produce an enzyme. The particular enzyme in question is what breaks down the amino acid phenylalanine, which is found in aspartame. Phenylalanine is also found in many other common foods that are high in protein such as meats, dairy products, eggs, nuts and breads. Amino acids are basically the building blocks of proteins, so if there’s a failure in the body to break them down then it has drastic consequences

Damage Done by Phenylketonuria

Some of the main health issues that are caused by phenylketonuria are abnormally sized head (microcephaly), seizures, body tremors, behavioral abnormality, brain damage, learning disability and developmental problems. These conditions are caused by the buildup of phenylalanine in the nervous system, which in turn is due to the phenylketonuria disability preventing the body from creating the enzyme to handle the phenylalanine.

When the above conditions present themselves in the life of an individual, then it takes constant help and monitoring to care for them. The diet of anyone suffering from PKU is specialized to ensure they receive the proper nutrients they need while eliminating as much protein from the diet as possible. The strains of these tasks prevent many phenylketonurics from managing their own day-to-day lives. When that happens costs mount up and make life even more daunting. Fortunately, under the Social Security Disabilities insurance (SSDI) program there is some financial support.

Applying for Assistance

Even though the Social Security Administration (SSA) recognizes the phenylketonuria disability, that doesn’t mean every diagnosis of the disease grants an automatic benefit. There are varying degrees of functionality for the people afflicted with this condition. What is necessary for the SSA to grant the benefit is for the patient to show proof that due to the condition they are unable to work. The way to show this to the SSA is to provide documentation of the issues caused by the condition as they are noticed on a day-to-day basis. Medical records showing the diagnosis and any possible side effects that have been uncovered as a result of the finding. Information about the onset of the claimant for when they were no longer able to work and information showing any improvements are all helpful in having a fair assessment of the severity due to the condition for social security disability benefits.

Applications to the SSA can move slowly, and in many cases they aren’t approved on the first round. Generally it takes 90 to 120 days for the application to be processed, so having complete information is very important at this stage to receive benefits as swiftly as possible. For the most severe cases there are options to allow for benefits to be paid while the application is still being reviewed but the disability must be shown to be drastically impairing the life of the applicant. If the first application is denied there is an appeals process setup to allow a continued effort to receive necessary benefits.

In what is called reconsideration by the SSA, they will take a look at the information provided a second time, but this first step in appealing can take three to five months to complete. This is why it’s so important to have the phenylketonuria disability properly documented, as these delays in review can be some of the most difficult time for a suffering person to work through.

If the reconsideration fails, then within 60 days of being denied the applicant can request a hearing. Administrative law judges preside over the hearings, and they can approve the claim, deny the claim or send it back for further review. As these processes seeking social security benefits often turn towards these judicial settings it is always recommended to seek legal counsel from the start of the application process to ensure the application is prepared properly. It’s during these hearings when most social security disability claims are approved. This process is time consuming and frustrating, especially if an applicant is unprepared for the process. While phenylketonuria disability can have financial assistance provided, it’s important to start the process swiftly and as accurately as possible to ensure the best chance for receiving benefits is taken.