- File completed
form with your local Social Security office. Make sure to always complete forms in full. Keep copies as back-up.
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
- 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
- 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 who have been approved
for support and/or 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 email@example.com,
firstname.lastname@example.org, email@example.com or firstname.lastname@example.org for more support and help. -Jon R.