Hi All It's been awhile since I have posted or visted the chatroom. Hope all is well with all you great people. The past few weeks my son Jonnie (Age 6) has...
Patty, God bless your son. I so know the pain and anguish he is going through about wanting to be "normal" again. I pray that God will be with you, Jonnie,...
Dear Patty, My heart breaks for what you and your son are going through right now. And at the same time I fear this for my own son. He is 4, almost 5, and was...
Well, I don't know if it effected it, but I had endometriosis. Hit me early, literally from the time my cycle started I dealt with horrible pain and problems....
Hello everyone, I have some questions for you females out there with Marfans. I am married to a 25 year male with Marfans and we have 3 children together well...
Thanks very much for conducting this survey and gathering and presenting all of the information. This is incredibley informative. ... one time or ... ...
Hi Amy, I can't claim to be a female, but I can offer you this piece of advise. I know a woman who has Marfans who was very concerned about the appearence of...
Thank you I really appreciate the advice, every little bit makes me feel better about it. Amy tall_by_nature <tall_by_nature@...> wrote: Hi Amy, I can't...
Thank you I really appreciate the advice, every little bit makes me feel better about it. Amy tall_by_nature <tall_by_nature@...> wrote: Hi Amy, I can't...
Hi I had a severe pectus and had it corrected at age 12 the old barbaric way where they broke the sternum and placed a bar underneath it for some time....
I'm not sure but the dissection i had in 2003 threw everything out. First they dissapeared for a while and then they came back with avengence with very heavy ...
Sue, it does help incredible. My husband also has marfans and his pectus is very noticable and he said it was very hard with all the questions and looks and...
Hi everyone, I have been reading the posts about pectus. My son does not have this, but his ribs flair out quite a bit at the bottom of his chest. I was just...
Hi Larie, My 2 year old with indented pectus also has where her ribs flair out at the bottom of her chest, my husband does as well it is not as noticable with...
Your welcome. I will continue working on many, many Marfan projects as I can. I hope the NMF will conduct the surveys on Marfan Awareness and Disability...
Suzie Glassey..........Can you explain me something that I really didnt understand.......What does MArfan have to be with the Ovaries????? Suzie Glassey...
ok finding out the marfans has nothing to do with her not having her monthly its the medication that she was on for her bipolar so now we are putting her on a ...
marfan has nothing to do with the ovaries that I know of. i was just explaining they let them in since they seemed to be healthy. I was cut straight down the ...
Thanks for your reply Amy. Its interesting, because the mfs specialist mentioned it and saide it was most likley because of the mfs, but then my father in law...
Hello Amy, I am also a 25 year old "female" with marfans, and I can tell you once your daughter gets to the "age" where looks matter for dating, she will be...
I have a 17 (almost 18) year old daughter with Marfans. She is a beautiful, articulate young lady, and this isn't only my thoughts a lot of people have said...
At severe risk of repeating myself possibly, I'd like to say that having pectus excavatum had a big negative impact on me growing up. But... at age 18 when...
CHAT Join us in chat every sunday night at 8:00(EST)7:00(CST)...
marfans_support_and_c...
May 8, 2005 11:52 am
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Amy, I agree with Heidie, kids will tease her horribly. I know I was. I know my self-esteem was horrible, so do whatever it takes to ensure she has great...
Hi all, I just registered here after finding a link from Jons website - http://jrmarfan58.com/ Let me start off with a little about myself. Im currently 20...
Hi Jake: This is Jon Rodis of _www.jrmarfan58.com_ (http://www.jrmarfan58.com) . I am happy you found this support group through my site and I am sure there...
Jessica is a 12 year old marf. She just had open heart surgery to repair the aortic valve (valve sparing technique) and aortic root replacement. She has been...
Thanks for the replies so far, as Connie requested here is a rundown of what the meds do. Nifedipine - is used to treat my high blood pressure, which seemed to...
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