X-linked lymphoproliferative disorder is a rare immune disorder caused by genetic mutations on the X chromosome. The disorder, which only affects males, results in uncontrolled production of lymphocytes, or white blood cells. Symptoms usually begin at six months to 10 years old.
Those who have X-linked lymphoproliferative disorder are unable to fight off Epstein-Barr Virus (EBV), a common herpes virus that in this case becomes potentially fatal. The condition is associated with certain types of cancer—including lymphomas—and other autoimmune disorders, such as multiple sclerosis and rheumatoid arthritis. However, the most common complication of EBV that X-linked lymphoproliferative disorder patients will likely develop is infectious mononucleosis, which causes fever and swollen glands.
X-linked lymphoproliferative disorder can be diagnosed through assessment of clinical history and immune functions. The diagnosis comes definitive when mutations of the SH2D1A gene are confirmed. There are several treatment options available for those with the disorder. Anti-viral medications can manage symptoms and complications associated with immune deficiencies, but transplants of hematopoietic cells from bone marrow are the only curative treatment.
In order to receive Social Security Disability benefits, you must be considered disabled by the Social Security Administration (SSA). Your specific disorder will be evaluated according to the SSA's technical guidebook of disabling conditions, the blue book. You will have to match a listing in the blue book, which contains all of the criteria to be considered disabled.
As an immune deficiency disorder, X-linked proliferative disorder is evaluated under section 14.07 (adult) or 114.07 (child) of the blue book, Immune Deficiency Disorders, excluding HIV disorder. You may also qualify under section 13.05 (adult) or 113.05 (child), Malignant Neoplastic Diseases – Lymphoma. Under this section, lymphoma developed in conjunction with X-linked lymphoproliferative disorder—particularly cases that require bone marrow transplants—can qualify for benefits.
Often, the Social Security Disability application process will take months to complete and the wait time can be even longer. Fortunately, the SSA is able to expedite the process for those who have severe and obvious disabilities through a program called compassionate allowances. X-linked lymphoproliferative disorder is considered aggressive and life-threatening and was chosen to be on the list of conditions eligible for compassionate allowances. Under this program, you can likely to expect to receive a positive decision within a month, if you have a listed condition that would clearly fit under the blue book parameters. The application process for compassionate allowances is no different than the Social Security disability benefits application.
The Application Process
Since compassionate allowances are not a separate program from Social Security Disability benefit programs, and the application is the same, you may start it online or during an in person interview with an SSA representative. Keep in mind that applications for children must be processed in person.
Before you begin, make sure you have all of the information required for the application. You should collect any records of medical visits and treatments, doctor's notes, and any definitive lab results confirming the diagnosis. For children, also consider statements from experts who have worked with your child.
If your application is denied, you are entitled to an appeals process, which must be completed within 60 days of receiving the denial. The SSA denies many first time applications because they are not completed or they simply do not supply enough information to confirm the condition's severity. You have to be as detailed and thorough as possible on the application in order to improve your chances. These benefits are designed to help you help you, but you still have to be very diligent during the applications process if you wish to receive benefits for X-linked lymphoproliferative disorder.