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Hey sorry this is a downer kindof message but Im looking for a little advice. Ive never been diagnoised with marfans but my mom has so that put me at a 50/50 risk however I have a dislocated lens and 2 or 3 other little tells so I figure ive got to face it. i have no insurance and dont plan toget myself diagnoised anytime soon. The advice im looking for is I dont talk to anyone about it I dont want to bring my husband down or mom or anyone else. where do you turn who gives u advice ect....
Posted on 09/08/09, 01:11 pm |
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the support of the groups and people ive met thru the national marfans foundation, and please dont feel like its a "downer" message or whatever... you need to get it out, talking makes it a little better
find marfans support near your, go and talk to them in person you WILL make it thru this...and emerge on the other side stronger as a result... :) best wishes 
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Hi coopersmom
There is a place that might be able to help you with not only medical treatment, but with medications you might need. I have copied and pasted the link below. The National Marfans Foundation also might have helpful suggestions or help to find the help you need. There are many support groups out there ready and willing to help... just find one and start talking. It really does help.. and when you find people who are going through what you are going through and pool together your experiences.. wonderful things can happen... good luck to you and I hope this was of some help to you. Linda http://www.needymeds.org/
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