FACTS ABOUT MARFAN SYNDROME AND FILING FOR DISABILITY



Facts about Marfan Syndrome 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) Marfan syndrome is a connective tissue disorder that can affect the skeleton, eyes, blood vessels and heart, among other body systems.

    2) It is an inherited disease caused by a gene defect. If a parent has the disease, their children have a 50 percent chance of also having the disease.

    3) The symptoms of the disease vary significantly, depending upon the body systems that are affected. This inherited disease can even have quite different symptoms among family members who share the disease. People with Marfan syndrome have a certain 'look', which usually includes being very thin and very tall with excessively long fingers, toes, arms and legs. The other most common symptoms are flat feet, curvature of the spine, heart palpitations, protruding breastbone, crowded teeth and acute nearsightedness.

    4) The gene defect with Marfan syndrome causes the connective tissues of the body to lose elasticity due to a lack of a certain connective protein.

    5) One person per 5,000 has the disease in the United States, according to the National Institutes of Health.

    6) The disease affects both sexes equally, and is present among all ethnic groups and races. The disease may be mild for some and life threatening for others, due to cardiovascular complications.

    7) Marfan syndrome most often causes complications with the eyes, lungs, and heart. In the heart it may cause valve malformations, aortic dissection, and aortic aneurysm. Those with the disease are at a high risk for sleep apnea, emphysema, collapsed lung, and COPD, and may cause complications with pregnancy.

    8) Since there is no specific genetic testing for Marfan syndrome, and it has similar symptoms to other diseases such as Homocystinuria, Beals Syndrome, Stickler syndrome, Ehlers-Danlos syndrome, Shprintzen-Goldberg syndrome and several others, it can be hard to diagnose. Tests to diagnose the disease may include MRI, Slit-lamp exam, Electrocardiogram, Echocardiogram, eye pressure test, and genetic testing to rule out other diseases.


    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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