OUCH!!! Looking things over, plane tickets have skyrocketed in price recently. Looking like after covering a part of one nights room, the Conference will cost...
Hello everyone, My name is Leah and this is my first time at using the support group. I'm 27 and have been aware of Marfans all of my life. I have recently ...
I will just quickly give an overview of the doctor appointment. Dallas. He had an EKG which was again abnormal due to a slow heart rate. the doctor does not at...
You can do a basic search of CTD.? Ehler Danlos, Marfan, Loeys Dietz, Hypermobile Joint Disorder and then others are Lupus, Scleroderma, Rheumatoid Arthritis,...
I agreewith you 100%. I have so far found 40 CTDs. it is interesting to me that you mention chronic Fatigue syndrome as I have been diagonsed with that. I...
Last year I asked for and got a copy of my 16 year olds complete medical records, (she went undiagnosed with Crohn's for over five months and the doctors just...
So my 8 year old son with mfs had an apt. at the Shriner's hospital yesterday. It turns out he does not have Scoliosis, Kyphosis, or Lordosis like the doc....
Marsha I would love to send her a card, do you have an adress for the hospital?? Larie iowamarf <iowamarf@...> wrote: Many of you know Velda, one of...
I had a complete spinal fusion, but I was nine at the time. Now I am over 60, and in much better shape than my son who had a harrington rod, because the...
She is at Methodist Hospital, 6565 Fannin Street Houston, TX 77030 I don't know a room number but would be cardiac unit. She had been in ICU most of the time...
Do you think If I just send it to that adress with her name it will get to her? Not sure how that works with hospitals? iowamarf <iowamarf@...> wrote: ...
Reminder from: marfans_support_and_chat Yahoo! Group http://groups.yahoo.com/group/marfans_support_and_chat/cal Marfan chat time Friday July 11, 2008 8:00 pm -...
marfans_support_and_c...
Jul 11, 2008 11:57 am
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My daughter had the same thing when she was seven, only it was the first vertebrae of the spine. at best if she would have had the surgery she would not of...
Oh Lynn, Thank you so much for sharing that with me. May I ask how and when your daughter passed ? My sons is in the very low part of his spine and it sounds...
Reminder from: marfans_support_and_chat Yahoo! Group http://groups.yahoo.com/group/marfans_support_and_chat/cal Marfan chat time Friday July 11, 2008 8:00 pm -...
marfans_support_and_c...
Jul 11, 2008 11:25 pm
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My daughter passed away when she was sixteen. Her Mitral valve gave out. She had been in alot of pain in her back the last three months of her life. I had her...
Lynn, Again thank you for sharing your experience with all of us. I am sorry for what your daughter and family have had to go through. You seem to have a...
Laurie, I can relate to the situation somewhat. My soon to be 8 year old son had rods put in when he was almost 2. It was for scloiosis. It is hard when they...
Hi everyone! I am alive and rrying to kick! I had a heat attack on June 10th, Husband did CPR util the ambulance arrived. Which answered my question about...
You are in my prayers! I'm glad to hear that you are okay. Amanda Sent via BlackBerry by AT&T ... From: Velda Gauze <veldaroyce@...> Date: Sat, 12 Jul...
Velda, Im so glad you're still fighting. You have been through so much ,how do you keep moving forward? You are an insperation to me! I am praying for a speedy...
Velda, I am so happy to hear that you are feeling a bit better. I know you are a fighter and will be out in no time. I will be keeping you in my thoughts and...
Reminder from: marfans_support_and_chat Yahoo! Group http://groups.yahoo.com/group/marfans_support_and_chat/cal Marfan Chat Time Sunday July 13, 2008 8:00 pm -...
marfans_support_and_c...
Jul 13, 2008 11:58 am
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Reminder from: marfans_support_and_chat Yahoo! Group http://groups.yahoo.com/group/marfans_support_and_chat/cal Marfan Chat Time Sunday July 13, 2008 8:00 pm -...
marfans_support_and_c...
Jul 13, 2008 11:25 pm
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Reminder from: marfans_support_and_chat Yahoo! Group http://groups.yahoo.com/group/marfans_support_and_chat/cal marfan chat time Monday July 14, 2008 4:00 pm -...
marfans_support_and_c...
Jul 14, 2008 7:55 am
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Velda, I remember when in 2005, you e-mailed me and gave me so much information about Dr.Cosselli. You were an inspiration to me in that difficult time. I did...
Reminder from: marfans_support_and_chat Yahoo! Group http://groups.yahoo.com/group/marfans_support_and_chat/cal marfan chat time Monday July 14, 2008 4:00 pm -...
marfans_support_and_c...
Jul 14, 2008 7:25 pm
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Reminder from: marfans_support_and_chat Yahoo! Group http://groups.yahoo.com/group/marfans_support_and_chat/cal marfan chat time Wednesday July 16, 2008 8:00...
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