Revesz syndrome is a congenital, and usually fatal, disease found in children that primarily affecting bone marrow and the retina of the eye. The blood system is dysfunctional and results in failure of the body's bone marrow, while there is also significant damage to the eyes, nervous system trouble causing balance and movement problems, and changes in physical appearance, particularly regarding skin pigmentation and hair.
Revesz is a rare disease that is usually diagnosed through blood tests and physical examination of eyes. If these tests yield results that point to Revesz syndrome, the child may also demonstrate balance and coordination issues and intellectual disabilities. Though the child will have had Revesz syndrome from birth, symptoms may not always begin to show until the child reaches 5 years old. Complications associated with Revesz syndrome are particularly troubling, as they may include liver or lung failure to accompany bone marrow failure and vision loss.
Because the disease is so rare and only observed since 1992, there is no cure or specific treatment for the condition. Instead, treatment is largely determined on a case-by-case basis and usually addresses individual symptoms. This may mean a bone marrow transplant, eye surgery and therapy, and therapy to improve coordination of movement and neurological functions.
Before someone receives disability benefits from the Social Security Administration (SSA), their condition must be considered long-term and must prevent them from working or functioning at age-appropriate levels on their own.
The SSA makes this decision using specific medical criteria for each condition it considers potentially disabling. This criteria is arranged according to the region of the body it affects and published in a guidebook called the blue book. In the blue book, which contains sections for adults and children, you will find listings for each medical condition and what must be observed in order for a case to meet that listing.
At this time, there is no listing just for Revesz syndrome. Instead, qualification for benefits will be based on whether certain aspects of the case match associated listings in severity. This means that a child with Revesz syndrome may qualify for benefits under the vision loss listings (found in Section 102.00 Special Senses and Speech) if they demonstrate severe vision problems as part of their condition. They may also equal the listing for hemolytic anemia (Section 107.03) in severity if significant blood issues are present.
The unfortunate truth regarding Social Security disability benefits is that the application and decision-making process can take a long time to complete. You may not be able to receive benefits for months or even years. This can be devastating for a family with a child suffering from Revesz syndorme. Thus, the SSA developed a system, called compassionate allowances, by which those with clearly observable and life-threatening conditions can receive benefits sooner, by way of an expedited application process. Revesz syndrome is one of the medical conditions identified by the SSA as time-sensitive and life-threatening, and therefore eligible for compassionate allowances.
The Application Process
It is important to note that the compassionate allowance program is not a separate program from Social Security disability benefits. You will start the application as you would normally, by participating in an in person interview with a representative from the SSA.
Prepare for the meeting by accumulating all information about your child's case that confirms the diagnosis and demonstrates its severity. You will need to meet both criteria in order to qualify. Bring results from blood tests and physical examinations, notes from eye specialists or dermatologists, and any other medical records that show your child's health is severely incapacitating.
You will also have to bring financial information, as you will be asked to provide these for specific disability programs. In the event your application is denied, there is an appeals process, which is separate from the application process and must be completed within 60 days to be considered valid.
It is important that you fill out the application completely, even if you plan on qualifying through compassionate allowance listing. These listings still require full applications. Social Security disability benefits can be incredibly helpful for families with children who have Revesz syndrome and can greatly improve that child's quality of life.