There are different types of Systemic Mastocytosis and any of them might qualify you for Social Security Disability (SSD) benefits. However, there is a rare and aggressive form that is characterized by a cancerous proliferation of mast cells in the blood. This type of Systemic Mastocytosis is called mast cell Leukemia (category IV). It is the only kind currently approved for accelerated review and approval by the Social Security Administration under their Compassionate Allowance program (CAL).
Systemic Mastocytosis Symptoms
This condition can attack the lymph nodes, liver, spleen and the gastrointestinal tract. It can also affect bones and bone marrow. Symptoms may be different depending on which parts of the body are affected.
Systemic Mastocytosis may include any of the following symptoms.
- Skin flushing
- Abdominal pain and cramping
- Nausea and vomiting
- Skin lesions
- Fainting due to low blood pressure
- Pain in the bones
- Cognitive dysfunction
Symptoms could be worse depending on the type of Systemic Mastocytosis.
Types of Systemic Mastocytosis
There are several forms of this condition that vary in severity, but there are four main types or categories that may be more common than the others.
- Indolent Systemic Mastocytosis: This type is considered a benign form of the condition. It is also the most common type. This form of the condition presents itself in the bone marrow or in various tissues. Common symptoms may include skin flushing, diarrhea, nausea and vomiting, and fainting due to low blood pressure.
- Systemic Mastocytosis with an associated hematologic nonmast cell lineage disorder: This type forms in the blood, but is not associated to Leukemia. It usually presents itself with other types of hematological conditions, but can be determined by a mutation found in abnormal mast cells.
- Aggressive Systemic Mastocytosis: As indicated by its name, this type is an aggressive form of the condition that attacks different tissues and organs. The symptoms include those associated with Indolent Systemic Mastocytosis in addition to pain, problems with organ function, bone problems, and potentially anaphylactic shock.
- Mast cell leukemia: This type is a malignant form of the condition where cancer is present. It is typically a pretty aggressive form and, while chemotherapy is a treatment option, it usually has a poor outcome.
The other types of this condition include:
- Cutaneous Mastocytosis
- Mast cell sarcoma
- Extracutaneous mastocytoma
Systemic Mastocytosis Diagnosis
Diagnosis is most typically based on observation of the many symptoms. However, blood tests must confirm that a minimum of 10 percent of your red blood cells have mast cells present.
Usually, that level will be far higher. Typical and atypical mast cells will also be discovered in the bone marrow and other organ tissues. Skeletal X-rays, liver function tests, skin biopsies plus CT scans are commonly performed during diagnosis. Testing for plasma tryptase and urine mediators, such as histamine, is also routine.
Is Systemic Mastocytosis deadly?
Since the various types of the condition range from benign to malignant, certain forms may be deadly. The deadly types are often the ones that are considered severe with little to know course of effective treatment. One thing to keep in mind with this condition is that it can progress into more aggressive forms. Even if an individual starts out with Indolent Systemic Mastocytosis, there is a possibility of it turning into Aggressive Systemic Mastocytosis.
Systemic Mastocytosis Causes
Most types of this condition are thought to be caused by a mutation of the KIT gene. There are certain mutations of this gene that overproduce mast cells and in case of this condition, the cells overproduce in tissues and organs. In Systemic Mastocytosis with an associated hematologic nonmast cell lineage disorder, the condition is caused by an existing hematological condition, as mentioned above.
Is Systemic Mastocytosis genetic?
This condition is not typically caused by genetics, but in rare cases it can be passed down by a family member. A person with this condition has a 50% chance of passing the condition down to each child they bear.
Systemic Mastocytosis Treatment
Once again, treatment depends on the form of the condition. Individuals with less severe forms of this condition, like those diagnosed with Cutaneous Mastocytosis, may be able to treat their symptoms by regulating their diet. This diet must include foods that are low in histamines or are unlikely to release histamines. Unfortunately, most of the aggressive forms, like mast cell leukemia are incurable, and have no effective treatment. Occasionally, severe cases are treated with stem cell or bone marrow transplantation, immunotherapy and chemotherapy. Treatment is mainly centered on keeping the patient comfortable. For the more severe cases, death frequently occurs within months of diagnosis. The Social Security Administration acknowledges this fact and has therefore approved Mastocytosis type IV for CAL.
Getting SSDI for Systemic Mastocytosis
Applying for Social Security Disability Insurance (SSDI) can take a long time. First, you must submit your application, which can take up to four months before being reviewed. Generally, 70 percent of those who apply for SSDI have their claims denied the first time. If you are denied benefits, you have to go through another review and possibly an appeal. The entire application process can stretch out over a year. Sometimes, it can take two years.
In 2008, the Social Security Administration began their CAL plan. It was designed specifically for those who have serious disabilities or fatal diseases and cannot wait for their disability benefits. CAL expedites the approval process for those patients who are obviously disabled or facing death. Mastocytosis type IV is one of 113 conditions on the CAL program list. While the SSA’s CAL plan shortens the application process, you must prove your case with as much supporting evidence as possible, including written statements from your physicians and test results. A thorough application will shorten the wait for benefits and can prevent the need for second reviews and appeals.
Getting Help from an Attorney
Hiring an attorney with experience in the SSDI application process will improve your chances of meeting the eligibility requirements. A disability attorney can guide you through each stage of the process. There is no fee for the case until you have been approved for SSDI.