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Hutchinson-Gilford Progeria and Social Security Disability

For anyone suffering from a disability, the process of applying for Social Security Disability (SSD) benefits can be frustrating, especially for those with very severe disabilities and terminal illnesses. The national average wait for the initial SSD application to be reviewed is between three and four months.

Additionally, the Social Security Administration’s (SSA) Disability Determination Services (DDS) denies about 70 percent of applications during the first review. Anyone denied benefits may need to go through a second review and potentially an appeal hearing before receiving a final decision on their eligibility. In all, this process can take several months to more than two years, in some cases.

Because those who suffer from very severe or terminal disabilities can’t wait months or even years for a decision, the SSA began its Compassionate Allowances (CAL) program in 2008. CAL essentially allows DDS workers to expedite the review and approval of claims for conditions which are clearly severely disabling and meet the SSA’s guidelines.

At the present time, there are 113 CAL conditions on the SSA’s list. Fifty-two additional conditions where recently approved, including Hutchinson-Gilford Progeria. The newly approved disabilities will become formally a part of the CAL program as of August 13, 2012.

If you’ve received a diagnosis of Hutchinson-Gilford Progeria, the following information will help you understand the SSA’s disability claims review process for this specific condition. It will also give you some guidelines for increasing your chances of being quickly approved for disability benefits under the CAL guidelines of the SSA.

Hutchinson-Gilford Progeria – Condition and Symptoms

Hutchinson-Gilford Progeria, also known as HGPS or simply Progeria, is a rare genetic condition that causes rapid aging in children. While the symptoms and signs can vary somewhat based on the child’s age at onset and the severity of the condition, the effects are fairly consistent.

Children with HGPS typically appear normal at birth but fail to thrive during the first year of life. Facial feature changes, including a receding jaw and narrow, pointed nose are usually the first sign. Other major signs develop between the ages of one and three, including progressive loss of all body hair and subcutaneous fat; bone, joint, and skin changes, particularly the skin on the stomach and upper thighs; and baby teeth also don’t arrive on time.

As the disease progresses, sufferers of HGPS experience hearing loss and continue to have tooth development issues. In some cases, there may also be symptoms of light sensitivity, excessively watery eyes, and Raynaud phenomenon, which causes discoloration of the fingers, toes and sometimes other areas of the body as well.

Children with HGPS have normal mental and motor skill development; however, terminal cardiovascular symptoms occur, and heart disease, congestive heart failure, or stroke is usually the cause of death. Most children with Hutchinson-Gilford Progeria live between six and twenty years.

Diagnosing Hutchinson-Gilford Progeria requires the recognition of symptoms, which then trigger a physician to look for genetic mutations. Molecular genetic testing is required for a definitive diagnosis.

Treating the condition focuses primarily on alleviating symptoms and keeping the child as healthy and comfortable as possible. Physical therapy, dietary adjustments, and medications may all be necessary. Children with the condition must also undergo frequent tests and examinations to monitor their condition, and to catch and treat new symptoms quickly.

Filing for Social Security Disability with Hutchinson-Gilford Progeria

The process of filing for disability benefits on behalf of a child is somewhat different, but the documentation required for showing the presence and severity of a disability is the same regardless. You must have extensive medical records in any claim for SSD. This is true even when your disability falls under the CAL program. In other words, even a diagnosis of Hutchinson-Gilford Progeria does not guarantee you’ll be approved for benefits, and may not prevent the need for additional reviews or appeals.

To reduce the chance you’ll be denied during the first review, you must provide adequate documentation related to the diagnosis and treatment of the condition. This includes all your medical records, lab and other test results, and statements from treating physicians. The more detail you incorporate in your application, the less likely the SSA is to delay your approval or to request further information.

Your Hutchinson-Gilford Progeria Social Security Disability Case

While Hutchinson-Gilford Progeria is now considered a Compassionate Allowances by the SSA, the diagnosis alone is not enough to be found eligible for SSD. You will still need to include substantial medical documentation in your application in order to receive benefits. A Social Security Disability lawyer can help you through the application and review processes and can shorten your wait for benefits as well.