I wanted to let you all know that I have completed collection of responses to the survey and I am beginning the analysis this weekend. I hope to be done before...
Just to let you know that an article about three generations of my family coming to peace (or not) with Marfan Syndrome is now available in the current (Apil) ...
Today has been a long and testful day. First let me tell you This Ronald Mcdonald house is great. I have my mom, my daughter, my husband, my self and Jason....
Rhonda, I pray everything went well this morning. May God be with you and Jason and the doctor's as he and your family goes through this time of trial. God...
Hiya! Well, I'm a healthy 6'3" 23 year old gal, and according to my doc "if I didn't know you had Marfan's, I would think I was looking at a normal, healthy...
Laura, I was wondering if you or your mother had the indented pecktus? I have a 2 year old daughter had her father has marfans and it looks like she may have...
Marfans and Awareness – SURVEY & Final Results I wanted to thank everyone once again for taking part in the survey. I am happy to report that I received...
HI Laura, You are lucky so far - lucky that your Mom is so vigilant! ANd it sounds like your cardiovascular system is not greatly affected by the Marfans....
Should I worry about my blood pressure spiking when I exercise? No one has ever told me that. I have an echo done every 3 years and so far all I have is mild...
It is amazing how much I don't know about in reference to Marfan's. My main focus has always been my eyes, since at birth they have given me problems. It...
CHAT Join us in chat every sunday night at 8:00(EST)7:00(CST)...
marfans_support_and_c...
Apr 10, 2005 11:45 am
1902
1)When I was 14 years old, they found out that I had Marfan. and Now im 17 years old 2) A Geneticist was the doctor who told me that I had marfan.. The MArfan...
Hi all Sorry I have not wrote sooner with the most marvalous news!!! Jason's surgery, done by Dr. Mee at the Cleveland Clinic on tue the 5th of April was a...
Hi Rhonda! I am so glad that your son's surgery went well. I had OHS at the Mayo Clinic in Rochester, Minnesota when I was 11 years old, and I can't imagine...
Rhonda, It is so great to hear that Jason is doing so good, tell him to keep up the great work!!!!! The constipation is normal with the pain medications that...
Hello Heidie Walker, I'm Martha Miller and I live in Vancouver WA. I also belong to the Marfans chatroom I just don't reply a lot. Congrats on your children...
Dear Martha, The symptoms that I had in the beginning were indeed chest pain. That is actually what brought me to the emergency room. I had a dull but...
Heidie, I read your letter with much interest, it was quite informative. With the issue about your decending aorta; My brother-in-law had surgery three years...
well Jason had his pacer wires removed today and his central line. one less thing to worry about ly pulling out. Dr Mee and his crew came to see Jason this...
Heidie, Your story is so awful, but so true. If you had not been diligent that something was wrong with you you wouldn't even have been in the hospital. I...
Hi Heidie, I am quite moved by your experience. Reading this helped me to pull my boot straps up. Thanks for the heads up on chest pain. I'm making an...
Thank you Michiell, That is very sweet of you. I hope I live you be 100 too! For my children's sake at least! You are going through eye surgeries? What kind?...
Thank you Debbie, I will keep that name on my lists. Too bad I am all the way on the other side of the country though. If I was in danger of death though, I...
I dunno about blood pressure spiking, but I know the NMF says you should keep your heart rate below 100 when exercising. My mother is able to do this, but she...
Just a quick note to let everyone know that i finally heard back from Make A Wish. They are coming to our home on the 19th of April to meet with our son...
Hi every one,,I am new,,I guess I read the intro wrong and thought that if I had a friend that had Marfans it was ok to be here,,is it still ok? The friend i...
funny I was just going to ask the same thing. Sue ... has anyone heard how connies daughter is doing? ... Yahoo! Groups Links To visit your group on the web,...
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