Connie, Sorry I could not be there last night, busy with the Trick or Treaters! I got on just as you were closing the room! I will catch up with everyone next...
Hi everyone... My name is Tom, and I have a marfan syndrome with me. That is the very reason I join the club. I am looking forward to know everybody. ... ...
Tell us about yourself a little more if you don't mind. We love to know how Marfans affects our members, how long they have been diagnosed, if you have...
Hi there... I am 23 years of age and I am not married yet. I was diagnosed that I have marfan with me when I was a small baby. I am not quite sure how old I...
hi all, I went and had the attempted stemting. Unfortunately it didn't work. Seems I have alot of re entry points along the length of the aorta. So the false...
Sue, I am very sorry to hear that your stenting procedure didn't work. My prayers are with you and your family in the upcoming days and weeks. Much hope and...
Thank you for forwarding Thomas' email address to me. I will definately drop him a line. vicki hurley <vicki24974@...> wrote:hello, tom glad you joined ...
CHAT Join us in chat every sunday night at 8:00(EST)7:00(CST)...
marfans_support_and_c...
Nov 7, 2004 11:32 am
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I am so sorry to hear that your stent procedure did not work. You are in my thoughts and my prayers. Gretchen Johnson Palatine, IL USA ... Do you Yahoo!? ...
Ty Gretchen! I appreciate that very much! Gretchen Johnson <gj0821@...> wrote: I am so sorry to hear that your stent procedure did not work. You are in...
Hope to see ya all in the chat room from 8-11pm eastern time. Just clik on the chat link on the left hand side of the main page of this group. I will be on msn...
SHOOT! I missed it Connie! Sorry, I hope to make the next one though. want2bteacher <want2bteacher@...> wrote: Hope to see ya all in the chat room from...
Sorry I havn't been to Sunday night chat...but things have been busy. Will try to make this next Sunday. Just wanted to say hello and welcome to the new...
Hey,I'm just checking in I have not been to sunday night chat because I've been doing bingo on sunday nights but I hope all is good with everyone.I pray for...
just joined this chat. very new to this and new to computers so bear with me. would like to share info on marfans, im suffering at the moment with it. my ...
Hello Tom. Thank you for sharing your story. It gave me some peace to my worries. I have two children. One has marfans. He is nine years old. He too has...
my son is nine and with marfans. extremly near sighted and a heart problem nothing major yet. I'm the one with the problems just trying to keep my faith and...
I found out this week that my 9 year old daughter has Marfans. I hadn't ever heard of it before two weeks ago, but as soon as I first read about it on the...
Welcome and Hello, My son is nine and a half with marfans. He is extremly near sighted and has an over sized aorta. We let him do what he wants to and he...
Michele, Consult with your physician! I have a 17 year old and a 27 year old (as well as my husband and other family members) who have marfans, we have known...
Please remember all, when children are affected by Marfans, you must have an adaptive PE program in place for them at school. This is so important. They can't...
Thanks for the welcome. It is great to be able to talk to someone who knows what we are going through. Brianna, my daughter, has the following symptom's:...
Hi, My daughter, age 11, is going to the geneticist this Wednesday to find out if she has this. I'm reading all your reports with great interest. My daughter ...
Connie, thanks for your welcome and help. I spoke to Brianna's PE teacher yesterday, and she suggested a meeting with her, the principal, and nurse to...
My geneticist and cardiologist both said that Brianna couldn't compete in any sport. Maybe it will be different for your daughter since she has actually be...
I feel that I need to reply to this just because. My son has been diagnosed with MF Syndrome since he was 8. Although he has some aortic root dilation, and...
As found at : http://www.marfan.org/nmf/GetSubContentRequestHandler.do?sub_menu_item_content_id=43&menu_item_id=7 Physical Education and Activity Guidelines ...
hi my son Jonathan is 12 and plays cricket but only B grade with a soft ball. He won't play A grade which involves a hard ball and knee pads. People are quite ...
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