Ehlers-Danlos Syndrome and Social Security Disability

A number of our Social Security Disability clients suffer from the relatively rare Ehlers-Danlos Syndrome. This is a disorder of the connective tissue, and it is hereditary. Individuals suffering from this disorder frequently experience the following symptoms:

∙           loose joints or "double joints,"
∙           small, fragile blood vessles, and
∙           abnormal scar formation or wound healing.

The course of prescribed treatment can include physical therapy, medications, and treatment of individual symptoms. There is no cure for the disease. While not all individuals who have been diagnosed with Ehlers-Danlos Syndrome will be found disabled under Social Security rules, one source of information for people with this disease that we recommend is the National Organization for Rare Disorders (NORD). NORD has a Web site full of information and resources to those suffering from Ehlers-Danlos Syndrome as well as other diseases.

Recently we have assisted individuals with Ehlers-Danlos Syndrome in getting Social Security Disability and Supplemental Security Income. Their cases were obviously among the more severe of those suffering with this condition. The degree of frequency and severity of an individual's symptoms are unique in each case and will determine, to a large degree, whether an individual claim will be granted benefits.

Some diseases are included in Social Security’s Listing of impairments and some are not. In some instances, a disease, while not Listed, is addressed in a Social Security Ruling. The Rulings offer guidance but do not set out specific criteria for an award of benefits. Other diseases are not in the Listings or recognized in a Social Security Ruling.

Regardless of the disease, you and your lawyer should have the following:
∙           a good working list of your symptoms,
∙           a knowledge of the degree of certainty of your diagnosis,
∙           a general understanding of the consistency between your symptoms and your diagnosis,
∙           a good understanding of what evidence might best support your contention that your symptoms are disabling, and
∙           which legal theory will most likely be accepted by the Social Security Administration given the particular facts of the entire case.

If you, or someone you know, is suffering from severe Ehlers-Danlos Syndrome, consider contacting the National Organization for Rare Disorders (NORD) for additional information on the disorder. If you are considering a Social Security Disability claim, we advise you to speak with an attorney. We handle cases throughout the state of Texas, but we are always happy to give you a referral if we are unable to assist you.

Comments

[shashank]

Here is a link to more information about the genetics of Familial Cold Autoinflammatory Syndrome that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Familial_Cold_Autoinflammatory_Syndrome/719. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA