Facts about Histiocytosis and Filing for Disability

These selected pages answer some of the most basic, but also some of the most important, questions for individuals who are considering filing a claim for disability benefits.

  • How to apply for disability and the information that Social Security needs

  • Who will qualify for disability and what qualifying is based on

  • Requirements for disability - Qualifications Criteria for SSD and SSI

  • How to Prove you are disabled and win your disability benefits

  • Facts about the condition

    1. Histiocytosis refers to several related syndromes in which the patient experiences an increased level of white blood cells (histiocytes) that support immune system functioning.

    2. Langerhans cell histiocytosis (LCH or histiocytosis X) is the primary form of the condition, although there are a variety of related syndromes. Malignant histiocytosis syndrome and hemophagocytic syndromes are the two other classes of histiocytosis.

    3. Langerhans cell histiocytosis is a systemic disorder, meaning it affects the entire body.

    4. LCH affects children most often; less than a third of all cases have been found to affect adults.

    5. In children with LCH, some parts of the body may present more symptoms than others. Since the entire body can be affected, there are many possible symptoms associated with the condition. These include problems with skin (rash), bones (lesions), inflammation (lymph glands, mouth and gums, face), and ears (cysts and discharge). Stomach and nutrition issues include vomiting, diarrhea, weight loss, jaundice and excessive thirst. There may also be fever, dizziness, headache, seizures, failure to thrive and irritability.

    6. Adults with LCH, like children, may experience symptoms that are worse in some parts of the body than others. Primarily affected parts of the body are the skin, bones and lungs.

    7. Diagnostic testing is different for children and adults. Children may have biopsies of the skin or bone marrow, a complete blood count, and a full body x-ray. Adults may have a bronchoscopy to look at lung function along with a biopsy, chest x-rays, and tests to determine pulmonary functioning.

    8. Treatment primarily includes corticosteroids to suppress the immune system's overreaction. Other medications and antibiotics may be used, as well as radiation therapy, physical therapy and care of targeted symptoms such as trouble breathing.

    9. The outcome of all types of histiocytosis depends on individual symptoms and the level of severity. Babies are more likely to have widespread severe symptoms that cause death, while older children may live a normal lifestyle with few problems.

    Qualifying for disability benefits with this condition

    Whether or not you qualify for disability and, as a result, are approved for disability benefits will depend entirely on the information obtained from your medical records.

    This includes whatever statements and treatment notes that may have been obtained from your treating physician (a doctor who has a history of treating your condition and is, therefore, qualified to comment as to your condition and prognosis). It also includes discharge summaries from hospital stays, reports of imaging studies (such as xrays, MRIs, and CT scans) and lab panels (i.e. bloodwork) as well as reports from physical therapy.

    In many disability claims, it may also include the results of a report issued by an independent physician who examines you at the request of the Social Security Administration.

    Qualifying for SSD or SSI benefits will also depend on the information obtained from your vocational, or work, history if you are an adult, or academic records if you are a minor-age child. In the case of adults, your work history information will allow a disability examiner (examiners make decisions at the initial claim and reconsideration appeal levels, but not at the hearing level where a judges decides the outcome of the case) to A) classify your past work, B) determine the physical and mental demands of your past work, C) decide if you can go back to a past job, and D) whether or not you have the ability to switch to some type of other work.

    The important thing to keep in mind is that the social security administration does not award benefits based on simply having a condition, but, instead, will base an approval or denial on the extent to which a condition causes functional limitations. Functional limitations can be great enough to make work activity not possible (or, for a child, make it impossible to engage in age-appropriate activities).

    Why are so many disability cases lost at the disability application and reconsideration appeal levels?

    There are several reasons but here are just two:

    1) Social Security makes no attempt to obtain a statement from a claimant's treating physician. By contrast, at the hearing level, a claimant's disability attorney or disability representative will generally obtain and present this type of statement to a judge.

    Note: it is not enough for a doctor to simply state that their patient is disabled. To satisy Social Security's requirements, the physician must list in what ways and to what extent the individual is functionally limited. For this reason, many representatives and attorneys request that the physician fill out and sign a specialized medical source statement that captures the correct information. Solid Supporting statements from physicians easily make the difference between winning or losing a disability case at the hearing level.

    2) Prior to the hearing level, a claimant will not have the opportunity to explain how their condition limits them, nor will their attorney or representative have the opportunity to make a presentation based on the evidence of the case. This is because at the initial levels of the disability system, a disability examiner decides the case without meeting the claimant. The examiner may contact the claimant to gather information on activities of daily living and with regard to medical treatment or past jobs, but usually nothing more. At the hearing level, however, presenting an argument for approval based on medical evidence that has been obtained and submitted is exactly what happens.

    About the Author: Tim Moore is a former Social Security Disability Examiner in North Carolina, has been interviewed by the NY Times and the LA Times on the disability system, and is an Accredited Disability Representative (ADR) in North Carolina. For assistance on a disability application or Appeal in NC, click here.

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