Hi everyone, I leave for the Mayo Clinic in 2 days. Hoping I get some answers there. I am excited in that I may get some relief from my chest pains and some...
Good luck Carolie, I will keep you in my prayers. Hope everything turns out fine, Im sure you'll make it through this. Keep your chin up and faith in your...
Best of luck at Mayo, hope all of your questions are answered. Ask lots of questions and make sure that they answer them so that you understand. Sometimes...
Hey Carolie, Hang in there! My prayers are with you! Ginger, Kentucky ... From: caroliemarie To: marfans_support_and_chat@yahoogroups.com Sent: Thursday,...
... aunt ... I ... you ... on ... so ... hi how are you doing ??? greatings from belgium. We talked 1 or times wuth each other (chat) i was wondering about...
I can't speak for Hopkins specifically although I did see Dr. Deitz at a national conference, my surgeon who is on the board recommends yearly echo before and...
Hello all, it is time for Sunday night chat. I will be in the room from 8-11pm eastern time. If you need any help as usual getting into the chat room, I am on...
CHAT Join us in chat every sunday night at 8:00(EST)7:00(CST)...
marfans_support_and_c...
Sep 12, 2004 9:34 am
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Ok all, the time has come for our Sunday night chat. If you would like to join us just come to the chat room, we will be open from 8- 11pm eastern time. If you...
Hi, I am a 42 year old female with Marfan Syndromes. Over the past 10 years or so I have been suffering from tremendous lower back pain. The doctors seem...
I am sure you can all run the Sunday night chat tonight without me, it runs from 8-11pm eastern time in the chat room here. I am unable to make it tonight as...
Jessica as some of you know has been having headaches, she underwent a painful test on Friday and her shunt is bad. They are going to replace her shunt on...
you have my prayers .i 'm sending love and light xx want2bteacher <want2bteacher@...> wrote:Jessica as some of you know has been having headaches, she...
I hope everything goes smoothly. We are thinking of you guys. Sue ... Jessica as some of you know has been having headaches, she underwent a painful test on...
I have Marfan, as does my 20-year-oold son. Several years ago, I woke up from mitral valve-replacement surgery with the left side of my body paralyzed by a...
hello, my 4 year old has marfan syndrome.i would like to talk to anyone who has a child with mafan syndrone so i will know what my daughter is going to have to...
there are wonderful people who are sufferers and share knowledge .if you type in marfans there is a huge fount of info... my prayers for you and yours x...
My daughter is 5 and constantly complains of leg and back pain.Is this common in children with Marfan? Also what is the recomendation on managing the pain, if...
Hello, My name is Lisa I am 24 and found out about my marfans last year. My aoric valve in my heart had to be replaced last year ,this is common in marfans...
hi Vicki I have marfans and so does 2 of my 3 children. My daughter is 7 and my son is 11. Please feel free to e mail me anytime at soozeege@... ... ...
my son had alot of leg pain with his rapid growth. I used to rub his legs for a bit and give him a nice warm bath. He enjoyed the attention. There wasn't alot ...
Hi Vicki, I am Debbie. I have two children with Marfans, although they are both older we have been dealing with this since they were infants. If I can help...
We dealt with growing pains a lot at this house. I just rubbed down legs with some lotion, sometimes bengay would help if it was really bad. A really warm...
My name ids Jon Rodis and I am fron Boston. I was wondering how many people on the list are from New England. I am working on getting a Marfan clinic here in...
