Xeroderma Pimentosum and Social Security Disability

The process of applying for Social Security Disability (SSD) benefits is often very lengthy, beginning with the three to four month average wait for the initial claim to be reviewed. The majority of applicants are also initially denied benefits, which means they must go through a second review and, in most cases, an appeal before seeing a final determination on their eligibility by the Social Security Administration (SSA). This full process can take a year or more, with some applicants waiting as long as two years.

Those with very severe disabilities and terminal illnesses simply don’t have years, or in some cases even months, to wait for disability benefits. Knowing this, SSA instituted the Compassionate Allowances (CAL) program in 2008. CAL is intended to speed up the review and approval process for conditions in which disability is inarguably present.

There are 113 conditions on the CAL program list currently and another 52 which were recently approved for addition, effective August 13, 2012. Among the newly approved conditions is Xeroderma Pimentosum.

If you’ve been diagnosed with Xeroderma Pimentosum, the following information will help you understand the SSA’s review process for disability claims. It may also help you increase your chances of being quickly approved for disability benefits under the CAL guidelines of the SSA.

Xeroderma Pimentosum – Condition and Symptoms

Xeroderma Pimentosum, or XP, is a rare genetic disorder in which the normal ability of the body to repair damage done by exposure to UV light is compromised or entirely defunct. Infants born with this condition can have varying degrees of compromised DNA repair mechanisms. Some may be able to have some UV light exposure with minimal affects, while others cannot be exposed to UV light at all without serious health risks, like the rapid development of various forms of skin cancer.

Infants born with XP usually appear physically normal. Common signs and symptoms of the disorder typically appear after initial exposure to sunlight or within just a few weeks of normal UV light exposure. Symptoms include the development of a severe sunburn with even minimal sun exposure, quick and profuse development of freckles at an early age, the rapid development of rough skin growths (keratoses), dark patches on the skin, and skin cancer lesions. Other signs can include spidery, subcutaneous blood vessels; dry and scaly skin; minimal body hair, especially on the chest and legs; severe eye irritation from sunlight exposure; and the development of corneal ulcerations.

Physical symptoms lead physicians to suspect Xeroderma Pimentosum and genetic testing can confirm the diagnosis, though there are multiple genetic defects which can result in the various forms of the disorder. For this reason, a geneticist is usually required for making a definitive diagnosis regarding the form of the condition present.

The avoidance of sunlight and all UV light, even manmade, is essential for XP sufferers. Treatment for the condition includes management of skin lesions, both benign and malignant. Rough skin patches, dark spots and other precancerous moles and lesions must be frozen or surgically removed. The same is true for cancerous growths. If cancer develops, chemotherapy and radiation therapy may also be necessary. Patients with XP require close monitoring to quickly address any new skin lesions and to prevent the development or spread of cancer cells.

The outlook for each person with XP is different, though approximately 40 percent do not survive beyond the age of 20 years, usually due to the development of metastatic skin cancer. For all others with the condition, prognosis is varied, with many living at least to the age of 40 years.

Filing for Social Security Disability with Xeroderma Pimentosum

Because Xeroderma Pimentosum affects infants, most SSD claims filed for the condition are submitted by parents filing on behalf of a child. While the process for SSD application on behalf of a minor varies somewhat from that of disabled adults, the documentation required by the SSA remains the same regardless. You’ll need to place all of your medical records in your application, including test results and labs in addition to written statements from all your doctors. The greater the documentation in your claim, the more likely you are to be immediately approved for benefits.

Your Xeroderma Pimentosum Social Security Disability Case

You’ll need to make your SSD application as thorough as possible to be approved for benefits without further delays. A Social Security Disability attorney who is familiar with the application process can help you ensure your file is complete and meets the SSA’s eligibility requirements. Having legal assistance can also help you get through the review process more quickly.

To learn more about the Social Security Compassionate Allowance listings or to discover about Social Security Disability benefits with a diagnosis of Xeroderma Pimentosum, request a free case evaluation today.

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