Compassionate Allowance - Hemophagocytic Lymphohistiocytosis (HLH), Familial Type

In most cases, making a Social Security Disability claim involves a long process of applying, being denied, and going through a series of appeals before a claim is ultimately approved or denied. The process takes a minimum of three months, and an average of a year. In some cases, claims have been known to drag out for several years before being resolved.

Recognizing that this is an unacceptable situation for people with terminal illnesses or who have conditions that cause them to be unable to take care of themselves, the Social Security Administration put together a list of conditions that they deem serious enough to warrant automatically qualififcation for Social Security Disability benefits. Claimants who have these medical conditions, called Compassionate Allowances, are moved through the system much faster than others. They often begin receiving Social Security Disability benefits in about a month.

There are currently 88 conditions that the SSA recognizes as qualifying for a Compassionate Allowance, and more conditions are currently under consideration. The accepted conditions, or listings, include a number of terminal cancers, rare debilitating diseases, medically verifiable mental conditions (such as schizophrenia), and degenerative nerve diseases (such as early onset Alzheimer’s disease). There are also a number of Compassionate Allowances for debilitating childhood conditions, most of which are fatal.

If you have a medically verifiable condition that meets one of the Compassionate Allowance listings, you qualify for the program. This means you can expect the SSA to flag your application to make sure that it is handled right away. In theory, you don’t have to do anything else unless the SSA requires clarification regarding your documentation. On average, you should expect to receive an approval in about three weeks and to start receiving benefits shortly after that.

Hemophagocytic Lymphohistiocytosis (HLH), Familial Type – Condition and Symptoms

The Familial type of Hemophagocytic Lymphohistiocytosis is a genetic disease caused by a mutation to the PRF1 (perforin) gene. This causes over-activity in the immune system that results in problems with inflammation; particularly in the liver, bone marrow, nervous system, and spleen. Because of this, those who suffer with Familial Hemophagocytic Lymphohistiocytosis typically end up with serious disorders in several of their bodily systems.

If Familial Hemophagocytic Lymphohistiocytosis (FHLH) is not detected and treated early, it is fatal. Even with appropriate and timely treatment, the disease is often terminal. Common early symptoms include jaundice, high fever (usually for a prolonged period), enlarged spleen, and the destruction of blood cells (primarily in the bone marrow, but in other tissues as well).

FHLH can strike any age group, though it most commonly strikes in early childhood, often in infancy. It is often triggered by other viruses and infections, especially rheumatic diseases.

The typical life expectancy of a person diagnosed with FHLD is a scant two to six months after the disease is diagnosed. Those who receive timely treatment fare a little better, but even in such cases, the 5 year survival rate is only about one in four. Treatments used include immunologic treatments and antibiotics. Occasionally, bone marrow or stem cell transplants are used. Each of the treatments used for this disease has had some levels of success. However, there is no standard treatment regimen.

It bears mentioning here that the other forms of Hemophagocytic Lymphohistiocytosis, namely Acquired HLH and Secondary HLH have a considerably better outlook and survivability rate, as they both respond much more consistently to treatment. Of the three forms of HLH, only the familial type qualifies for a Compassionate Allowance, though those who suffer from the acquired or secondary HLH may apply for Social Security Disability benefits as well as long as their condition is completely disabling and expected to last for at least one full year.

Filing for Social Security Disability with Hemophagocytic Lymphohistiocytosis (HLH), Familial Type

If you or your child has been diagnosed with Familial Hemophagocytic Lymphohistiocytosis, you qualify for a Compassionate Allowance. In practical terms, this means that you are automatically considered disabled by the Social Security Administration and that you will start receiving the Social Security Disability benefits you are entitled to in a matter of a few short weeks (often as early as three weeks), rather than having to wait several months for a determination.

When you file, you will want to make sure that your medical records include a complete medical history and a complete description of the findings from the physical exam that led to the diagnosis. You will also want to make sure that all pertinent lab tests are included in the medical file, as these will be used to confirm the doctor’s diagnosis.

Your Hemophagocytic Lymphohistiocytosis (HLH), Familial Type Social Security Disability Case

The best way to be positive that everything is filed correctly and that all of the medical records the SSA needs to render its determination that you qualify for a Compassionate Allowance is to contract a Social Security Disability lawyer to evaluate your claim before turning it in.

Studies consistently show that those who use a Social Security Disability attorney are more likely to have their disability claims accepted in the early stages of the process. To have an experienced Social Security Disability attorney review your case, simply fill out the request for a free evaluation.