Connective Issues Spring 2018


SOCIAL SECURITY DISABILITY By Dawn Knowles On February 27, the Marfan Syndrome and Related Disorders Empowerment Series featured a talk on Social Security Disability Insurance (SSDI) and Supplemental Security Insurance (SSI) with speakers Jon Rodis, a national disability advocate who has Marfan and is the President of the Foundation’s Massachusetts chapter, and his wife, Kathleen Kane, Esq., a disability attorney. The webinar featured excellent information for those starting the process. Here are the six things I learned from the webinar that I wish I had known before. 1. Know that inner turmoil and wrestling is normal as you decide to give up your career. Deciding to apply for disability is difficult and requires an exploration of health, financial, and emotional considerations. Jon shared that the emotional piece was toughest for him and I found the same to be true for me. 2. Most people are denied initially. Jon said, “Don’t get discouraged when you get that first letter of rejection because that’s almost automatic… some people don’t realize that they should really continue and it’s just part of the process… that’s when you appeal.” Jon and Kathy went on to say that many are denied again. The next step is a hearing a year or so later and that’s when many are approved. Don’t give up! 3. A daily journal is important. Record your health details and how you are feeling. Be specific about pain, energy levels, or whatever your issues are. If you were so fatigued you couldn’t shower, write that down. These details are valuable. 4. Learn as much as you can about your specific condition so you can share what you know. Check out for resources. Even the medical experts with the Social Security Administration (SSA) may not fully understand the implications of Marfan syndrome and related disorders. 5. Invite support from your medical team. Review your medical records and talk to your doctors about anything you don’t agree with. Write a statement about your exact limitations, detailing everything physical and mental you deal with and showing what your daily life is like, to share with your doctors and SSA. If it plays into your functionality, it matters—that includes depression and anxiety. If your condition isn’t on the SSA list of impairments, your limitations and residual functional capacity are what makes you disabled. 6. Jan Lynch, MSN, RN, director of the Help & Resource Center at The Marfan Foun- dation, can write a support letter for you. She will work with you to describe your health condition and explain how limiting and disabling it is, whether you have Marfan, Loeys-Dietz, or Ehlers-Danlos syndrome. Email her at


The Marfan Syndrome and Related Disorders Empowerment Series has featured several vital topics on quality of life issues since it launched earlier this year. • Physical therapy for people with Marfan syndrome, Ehlers Danlos syndrome, and other connective tissue disorders. • Social Security Disability Insurance and Supplemental Security Insurance. • Self-care and empowerment strategies. • Mental health care for beginners. “So appreciative of this insight.” “Really appreciated the input and suggestions.” “This was excellent! Well worth the time. It had practical information in an easy-to- understand format. Loved how the questions were handled at the end.” The recordings of all webinars are available via the Empowerment Series page of our website. The site also provides information about upcoming webinars and how to register. If you’d like more information or if you have suggestions for future webinars, please contact Susan Leshen, director of patient and program services and volunteer development, at The Marfan Syndrome and Related Disorders Empowerment Series is made possible by an educational grant from the Chu and Chan Foundation.

If you are considering applying for disability now or in the future, I recommend the webinar. A recording is available on the Foundation website.

Dawn Knowles was diagnosed with Marfan syndrome at age 21 and survived an aortic dissection at age 28. She loves writing, going to the beach, and, most of all, spending time with her husband, adult kids, and two adorable grandsons in sunny California. Dawn is a member of the Foundation’s Marfan Writing Group.

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