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Lesch-Nyhan Syndrome and Social Security Disability

This year alone, the Social Security Administration will receive millions of claims for disability benefits, and the majority of applicants will have to wait more than a year before being approved for the Social Security Disability benefits they need. While the initial application process usually takes disability applicants only three to four months to complete, an average of only about 30 percent of applicants are actually approved at the initial application stage. The remaining 70 percent of applicants must go through the lengthy disability appeal process if they ever hope to receive the Social Security Disability benefits to which they may be entitled. To make matters worse, it takes some applicants more than two years to be scheduled for the hearing necessary to complete the SSA's disability appeal process.

When a Social Security Disability applicant cannot wait months or years for an approval of their disability claim, however, the SSA's Compassionate Allowances program may be able to speed up the application processing time. In 2008, the Social Security Administration introduced the Compassionate Allowances program, which allows some applicants to be approved for disability benefits in a matter of weeks rather than a matter of months.

There are 88 disabling conditions that qualify an applicant for expedited claim processing under the Compassionate Allowances initiative. Lesch-Nyhan Syndrome, also known as LNS, is one of the 88 conditions that qualifies for Compassionate Allowances processing.

If your child has been diagnosed with Lesch-Nyhan Syndrome and you are wondering how the condition affects your child's eligibility for disability benefits, the following information will help you understand the disability claim process and how you can ensure your claim for benefits is processed quickly and efficiently according to the Compassionate Allowances guidelines.

Lesch-Nyhan Syndrome (LNS) - Condition and Symptoms

Lesch-Nyhan Syndrome is caused by a deficiency of the hypoxanthine-guanine phosphoribosyltransferase enzyme. LNS is often inherited, and in approximately two-thirds of cases the condition is passed down from a mother to her son. The other one-third of babies who develop this condition have no family history of the disorder. Lesch-Nyhan Syndrome is a very rare disorder is caused by a mutation of the HPRT gene on the X chromosome, and the disease affects only about one in every 380,000 live births.

The enzyme deficiency caused by Lesch-Nyhan Syndrome results in a build-up of uric acid in the fluids of the body. This uric acid build-up then results in severe gout, impaired mental functioning, and poor muscle control. These symptoms will present themselves within the first year of a patient's life. In the second year of life, additional symptoms including lip and finger biting and self-mutilating behaviors may present themselves. Facial grimacing, writhing, and repetitive movements are also symptoms experienced by Lesch-Nyhan Syndrome patients. In some instances, megaloblastic anemia may also develop.

Unfortunately, there is no cure for Lesch-Nyhan Syndrome. Treatment for the disorder focuses on addressing the symptoms that are caused by the condition. Gout, for instance, is usually treated with allopurinol, and kidney stones can be treated with lithotripsy. Some patients may also be treated with a variety of prescription medications including phenobarbital, diazepam, haloperidol, or levodopa. In most cases, a patient diagnosed with Lesch-Nyhan Syndrome will not live beyond the twenty years of age.

Filing for Social Security Disability with Lesch-Nyhan Syndrome (LNS)

Having a child receive a diagnosis of Lesch-Nyhan Syndrome can be a very stressful and traumatic experience. It is not uncommon for one of the child's parents to stop working in order to meet the needs of the child. Compounded with the substantial medical expenses associated with caring for a disabled child, this can cause serious financial hardship for families with children who are suffering from the condition.

In some cases, disability benefits obtained through Social Security may be able to help.

When applying for Social Security Disability benefits for a child who has been diagnosed with Lesch-Nyhan Syndrome, you will need to provide the SSA with as much medical evidence as possible to support your disability claim. Medical records including lab results and treatment histories should be submitted along with your disability application. Written statements from treating physicians may also help your claim for Social Security Disability benefits.

Your Lesch-Nyhan Syndrome (LNS) Social Security Disability Case

Many parents assume that their child's application for Social Security Disability benefits will be automatically approved by the SSA because their child's condition falls under one of the 88 conditions that qualifies for processing under the Compassionate Allowances guidelines. Unfortunately, this is not always the case. While it does not happen often, the Social Security Administration has denied initial disability claims based on Compassionate Allowances listings. While your claim will be given higher priority during the appeal process because your child's condition does fall under a Compassionate Allowances listing, you should still do everything you can to avoid the complicated disability appeal process.

One of the best ways to avoid a denial of your initial application for Social Security Disability benefits is to retain the services of a qualified disability attorney or advocate. This professional will work with you to ensure that your claim is submitted properly to the Social Security Administration and that the adjudicator reviewing your application understands how your child's condition qualifies for processing under the Compassionate Allowances guidelines. If, for some reason, your child's application is denied by the SSA, your attorney or advocate can ensure that your child's appeal receives the priority attention it deserves.