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Cerebrotendinous Xanthomatosis and Social Security Disability

On average, applications for Social Security Disability Insurance (SSDI) benefits take four or more months for the initial review to be completed. For a variety of reasons, the Social Security Administration (SSA) denies the majority of applications (about 70%) following the initial review as well.

When an initial application for SSDI benefits is denied, the applicant must go through a reconsideration review and will eventually need to file an appeal if he or she is denied benefits a second time. All together, this entire process can take a year or more to complete.

As those individuals who suffer from very severe disabilities and terminal illnesses don’t have months or years to wait for a decision on their eligibility for benefits, the SSA has alternative review and approval processes in place for addressing claims filed with certain diagnoses. Under the SSA’s Compassionate Allowances (CAL) program, a list of clearly and inarguably disabling conditions exists. Claims which are filed for SSDI with a diagnosis on the CAL list are expedited in order to provide benefits in a timelier manner to those who need them most.

At present, there are 113 disabling conditions which are among the SSA’s CAL list, though 52 additional conditions were recently approved for the list, including Cerebrotendinous Xanthomatosis, which will become an active condition in the CAL program as of August 13, 2012.

If you’ve received a diagnosis of Cerebrotendinous Xanthomatosis, the information that follows may help you understand how the SSA reviews disability claims for the specific condition. It will also provide you some guidelines for seeing a quick and smooth approval of disability benefits under the CAL guidelines of the SSA.

Cerebrotendinous Xanthomatosis – Condition and Symptoms

Cerebrotendinous Xanthomatosis, which is also known as Cerebral Cholesterosis, Van Bogaert-Scherer-Epstein Syndrome, or as simply CTX, is a rare genetic disorder in which the body does not properly process fat, especially certain forms of cholesterol. Because individuals with CTX are unable to break down fat, fatty deposits build up in different areas of the body, especially in the tendons and the brain.

The earliest signs of the disorder include chronic diarrhea, prolonged jaundice, and hepatitis in infancy, and the development of cataracts in children. If the disease is left untreated, it can lead to brittle bones and neurological issues, including seizures, dementia and hallucinations.

People with CTX can also have coordination problems, speech issues and depression, among other symptoms. CTX sufferers additionally have an increase risk of developing cardiovascular problems due to elevated cholesterol levels in the blood stream.

If the disease goes untreated, signs and symptoms will worsen over time, but the outlook for patients with this disorder varies greatly, with and without treatment. The most common and most effective treatment for early CTX diagnosis is Chenodeoxycholic acid (CDCA) replacement therapy.

In cases where CTX is not diagnosed until later and has therefore had the time to cause more lasting issues, other treatments may be required, including drug regimens for bone density issues. CDCA replacement therapy has also been an effective treatment for reducing and/or eliminating some symptoms in patients who receive a later diagnosis as well.

Most who suffer from CTX need to have cataract removal surgery performed before the age of 50 in order to prevent blindness. CTX symptoms and the treatment regimen can have a disabling affect on any individual with the disease, regardless of current age and/or age at diagnosis. For this reason, the condition has been added to the Compassionate Allowances list of the SSA.

Filing for Social Security Disability with Cerebrotendinous Xanthomatosis

Because Cerebrotendinous Xanthomatosis affects infants and children, the most common SSDI claims filed with this diagnosis involve infants, children and teenagers. These kinds of claims are usually filed by parents seeking benefits for their children. The processes for applying for SSDI on behalf of a child is somewhat different than it is for disabled adults. Although the application process varies somewhat, the documentation required for proving a disability is basically the same in any SSDI claim.

Of course, some SSDI claims with a diagnosis of CTX also pertain to adults who are disabled by the condition. Again, the application process may be slightly different for adults than for disabled children, but the documentation necessary for eligibility for disability benefits remains the same.

Thorough medical records must be presented in any SSDI benefits application, even when the claim is filed for a condition which falls under the CAL program. In other words, a diagnosis of CTX does not eliminate the need for medical records. In fact, your application should contain all medical records, including labs and other test results as well as statements from the different physicians who’ve treated the condition.

Your Cerebrotendinous Xanthomatosis Social Security Disability Case

While CTX is now considered among the conditions with expedited review procedures under the Compassionate Allowances program of the SSA, filing a claim with a diagnosis of CTX still does not guarantee approval for disability benefits. You must still substantiate the disability by having a well documented case file and application. A Social Security Disability attorney can assist you in putting together your application and getting the appropriate documentation for proving your disability.

To learn more about the Social Security Compassionate Allowance listings or to discover whether you qualify for Social Security Disability benefits with a diagnosis of Cerebrotendinous Xanthomatosis, request a free case evaluation today.