Disability in EDS

Disability in Ehlers Danlos Syndrome, Loeys-Dietz syndrome, Marfan syndrome, and other connective tissue disorders

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Applying for disability does not mean that you are permanently disabled. It is a temporary step towards helping patients financially to pay their bills, get their medications, braces etc. Many people use it as a crutch and once they get better, they do not need disability benefits anymore. At the Center for Complex Conditions we have seen this again and again over the last 30 years.

The first step in applying for disability is to see a physician who gets the whole picture. Not just PoTS, not just MCAS but connects all of those. Thee reports must show how all of these conditions affect functioning and how do they affect functioning.

The next step is to download the free book on disability in patients with EDS, Loeys. Dietz syndrome, Marfacn syndrome and other connective tissue disorders. This will guide you as to each and every different manifestation of these conditions and what the SSA looks for when you apply for disability

Resources for applying for disability in patients with Ehlers-Danlos Syndrome, Loeys-Dietz syndrome, Marfan syndrome, and other connective tissue disorders are available. Dr. Pradeep Chopra, alongside a team of experts on connective tissue disorders, was commissioned by the National Academies of Sciences, Engineering, and Medicine to develop guidelines for disability in patients with heritable connective tissue disorders. This project spanned two years and the resulting guidelines are freely accessible at the link provided below.

https://nap.nationalacademies.org/login.php?record_id=26431

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