Sjogren-Larsson Syndrome (SLS) is a rare genetic condition that affects the skin and nerves from birth. SLS is actually a particular form of Icthyosis, which is marked by scaly skin covering that becomes cracked and dry. The condition is caused by having an irregular ALDH3A2 gene, which is responsible for production of a certain enzyme. A deficiency of this enzyme leads to SLS.
SLS is easily observed at birth, with the baby having dry red skin that eventually turns brown or yellow as the child ages. The dryness will likely causes itchy sensations and other symptoms include: neurological issues—especially paralysis or low function in the legs—speech and vision troubles, and developmental delays, including intellectual disabilities. Seizures are also common in some cases.
The physical symptoms will usually be expressed from birth, while some of the neurological and intellectual symptoms may not appear until several months to two years of age. In order for someone to have SLS, both parents must carry the SLS gene, found on chromosome 17. Diagnosis can be made through a combination of physical examination, genetic testing, and ruling out other forms of icthyosis.
There is no cure for SLS, but treatments, such as topical ointments and daily baths, can reduce dryness or itchy skin. Additional supervision and therapies can help manage intellectual disabilities and occupational, speech and physical therapies are recommended for those with neurological problems. With the advancement of medical technology and therapeutic technique, those with SLS can grow to live normal lives if they have access to these treatment options.
In order to receive Social Security Disability benefits from the Social Security Administration (SSA), the organization must find you to be considerably unable to work, or in the case of a child, function and develop at age-appropriate levels over an extended period of time.
The SSA will make its decision based on assessments of your or your child's medical condition based on specific criteria for that condition, as it is found in the “blue book,” a guidebook of all medically disabling conditions. The blue book is divided into separate listings for adults and children.
SLS does not have its own listing in the blue book and you will need more than just a diagnosis for the SSA to approve you for benefits. Adult listings for SLS are largely limited to Sections 11.07A Neurological disorders and 12.05 Mental disorders, which deal with intellectual or developmental delays, since icthyosis in adulthood is not considered life-threatening. For children, SLS is also evaluated under the Neurological and Mental sections, though within these sections, motor dysfunction and seizures are also considered.
In most cases, the Social Security Disability application process takes months to complete and receive a decision. This can be dangerous and further troubling for those with conditions that are time sensitive, aggressive, and easily observable. In response, the SSA has compiled a list of conditions and diseases that are eligible for an expedited evaluation process, based on their severity. This program, called compassionate allowances, allows individuals with these conditions to apply for and receive benefits based on minimal objective medical evidence.
In this case, SLS is one of the listed conditions eligible for compassionate allowances. The application process remains the same, but you can instead expect to receive a decision in a matter of weeks, as long as the SSA finds that you meet the minimum medical requirements.
The Application Process
You can start the application as you would normally—online or in person. Applications for children cannot be processed online and must be conducted in person with a SSA representative.
Before you start completing the forms, make sure to gather as much of the required documentation as you can. You will need records of doctor's visits and any therapies received, as well as confirmation of the diagnosis and notes from a doctor about the severity of the condition. For a child, you may want to seek additional statements from other professionals familiar with the condition who have observed significant disabling qualities in your child's particular case. Be sure to also have financial and/or work history information available, as you will be asked to provide these when you choose a specific disability program. Applications that are not approved for any reason may be appealed within 60 days.
Remember to fill out the application completely, even with a compassionate allowance listing, or you run the risk of being denied. Be thorough and remain organized throughout the process, and you can put yourself in a much better position to be approved by the SSA for disability benefits. These benefits can make an incredible difference in care and quality of life for someone with SLS.