Living With Marfans

Social Security Disability Checklist

This page was set up to aid anyone who is applying for Social Security Disability. Hopefully it will make the process a little easier.

  • File completed form with your local Social Security office. Make sure to always complete forms in full. Keep copies as back-up.
  • Call regarding state disability funds or check online for your state's funding and assistance programs.
  • Contact the Marfan Foundation - after the first denial of benefits - request a letter of support if you have Marfan. (contact me regarding LDS or EDS)
  • Make appointment with personal physician(s) - advise of filing.
  • Compile Marfan and related disorder support info - web pages, letters, research, etc.
  • See Marfan and related disorder doctors for additional support and follow-up.
  • Get copies of all your medical records. (review them) Keep copies of everything in a folder or an a disc.  Amend anything that is inaccurate.
  • Look for Marfan or related disorder people within your state for doctor referrals.
  • Once you have been denied the second time, consult a disability attorney that has several years experience and speak to the attorney immediately.
  • Make sure the attorney has all info - medical records and all above. Also, make sure they understand your limitations and your condition(s).
    MOST IMPORTANT - Keep a daily health journal that lists all your daily activities (and problems doing them) symptoms, appointments, results, INR's, notes, etc.  It can be very useful in your case but also with your doctors care going forward. -I can be contacted at,, or for more support and help. -Jon R.

Full up-to-date Bios of Jonathan and Kathleen can be provided on request.

Updates BIOs can be provided on request.