- 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.
- Make appointment with personal physician(s)
- advise of filing.
- Compile Marfan and related disorder support info - web pages, letters, research, etc.
Marfan and related disorder doctors for additional support and follow-up.
- Get copies of all your medical records.
Keep copies of everything in a folder or an a disc.
- Look for Marfan 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 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.