My daughter has Marfans, she is know 12 years old. We are a bit different than some of the other children affected on here, because she was diagnosed as an...
Hey gf update us, I am dying to know here, what did she wish for and how did the visit go? Waiting on the edge of my seat.... Oh by the way are you a member of...
Thanks! Let us know how it went with the Make A Wish Foundation. ... From: rdrose4you To: marfans_support_and_chat@yahoogroups.com Sent: Friday, December 31,...
the visit went well they brought her a hilary duff movie and a cd she asked for a shopping spree in boise with her cousin which will be granted with in a ...
myself and my daughter are on it it took me forever i had to appeal it i acted as my own attorney meghan got it for her lens stuff and for legally blind got...
Jon, I have been told by the Marfans Foundation to get ahold of you about Tony's social security disability. When would be a good time for us to talk? My...
CHAT Join us in chat every sunday night at 8:00(EST)7:00(CST)...
marfans_support_and_c...
Jan 2, 2005 12:01 pm
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Lol, we have been joking that maybe you all have hangovers still from the holidays. Well, I hope some of you are still sober and can join us in the chat room...
I tried to get into the chat room tonight but it wouldn't load. I don't know if I am doing something wrong or what. I'll try again next time. Thanks Gretchen...
Please add me to your yahoo or msn messanger and I can help you even sometime this week when I am on. I am want2bteacher on yahoo and want2bteacher@......
Has anyone heard this? My moms doctor told her today that they are very close to finding a cure for marfans. They said that in the next few years there will...
never heard of that but that would not take care of the dislotacited lens maybe the heart but not the eyes ... __________________________________ Do you...
Hi, my name is Charity and I am the mother of a 2 1/2 year old daughter named Kayley. She has been diagnosed with marfans and has to go for her second...
Someone posted the normal measurements of the ascending, descending, & abdominal aorta sometime back. I had a copy of it but now can't find it. It was also...
Charity, Believe me I know how hard it is to keep a two-year old happy while they are going through an echo, done it for a long time, keeping a 17 year-old...
When my daughter was 2-5 she needed to have a mild sedative given before the exam, this relaxed her but did not put her to sleep. You can just play it by ear...
No I have not heard a thing about it. I am a member of the Marfans list and I am sure they would discuss something like that on the list! Hmmm I am also...
Well my mother asked about the eyes. The doc said no it wont fix the dislocations but since the tissues in the eyes will be normal again, its likely surgery...
Strange. The doctor that told us this was a Dr. Reidi. He is an eye surgeon in the Buffalo NY area. He claims that he is working with the top researchers...
Hello everyone, i do not usually post, but was intrigued by this one. My son is in Johns Hopkins as we speak, he just got out of surgery a couple of hours ago....
I believe what you are talking about is what was discussed in the last NMF Connective Issues, where Dr. Hal Dietz discussed the research being done with the...
Interesting. I have been on losartan for at least a couple of years. At the time I was put on it, I was told I would probably last a couple of months at the...
As Dr. Dietz states, this drug is not to fix problems that already exist, such as valves that are severe and roots that are too dialated. This is to slow the...
I'd try looking through old messages on our message boards. ... descending, & abdominal aorta sometime back. I had a copy of it but now can't find it. It was...
Yeah did that. Computer crashed about 6 months or so ago so lost those messages had saved, so hoping someone else had or whoever posted could resend. Thx ......
