Sorry all I was a few minutes late, but the usual Sunday night chat is happening, I will be in the room until 11pm eastern time. Hope to see you all there. I...
I don't know what I am doing wrong but I am not getting anyone online!!! am I in the right chat room gmarfansmarfanssupport group1 if not please tee...
Hello, we are here, if you need some help, add me to your yahoo messanger if you have it. My ID is want2bteacher. I can help you, there are a few of us in...
Wow, what a great chat we had tonight. There were many old and new members. It was a great combination. It was really nice to meet and chat with Karen tonight....
We had a special voice session today at the end of our chat time (after the usual chat room hours) and it made me wonder if any of the members here would like...
Enter your vote today! A new poll has been created for the marfans_support_and_chat group: Who would like to have a voice chat time designated here? If so...
marfans_support_and_c...
Jun 2, 2003 3:51 am
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Hello Brenda, hope this post sees you having one of the best birthdays ever. You deserve it! I hope you don't think I was not the type to remember you on your...
Hi my name is Beth and i lost my beautiful baby boy to infantile marfans. He was only 6 months and i just wanted to know if you knew of anyone else who has...
Hi Beth, I am so sorry for your loss. Our son was diagnosed at birth with infantile Marfans, and we too were told that it was extremely rare. After several...
Well, I might be able to help you more if I knew more about infantile marfans. From what I have read on it, it is the marfan syndrome that shows up and is...
I am so sorry for you both and all babies and parents that have to suffer with Hellish Marfans . My name is Mark and I suffer from it also ... May GOD grant us...
Beth i am so sorry to here of the loss of your beautiful baby son.My heart goes out to you.Best wishers Sue ... __________________________________ Do you...
hi im intrested in the marfans chat but every time i go in theres no one in there wot time is it in the uk time please? ... It's fast, it's fun and it's free!...
Hello. My name is Ken. I have Marfans. Not too bad of a case of it. I don't have major heart problems but do have achy joints and pretty much blind without...
I've been informed that Tuesday's and Thursdays are the worst times for yahoo messing up.Wednsday nights some people may be in church.If it's daytime people...
Hi, I'm asyurah .. my left eye is also dislocated and maybe i will have to go for an operation too. Before that the doctors told me to use contact lenses but...
Hi Nikki, Just catching up on my mail, welcome to the group. I was diagnosed 5 years ago with MFS my son David (Day) also has it he was 9 at the time. If you...
I had been legally blind most of my life because of dislocated lenses. Always had to wear very very thick glasses which still did not give me great vision but...
Hi Ken, Doing the operation 10 times a day doesn't answer the question of how many patients with Marfans has your doctor treated. The reason the lenses and...
Hi Ken Just catching up on my messages too I had subluxation of the lenses too (Marfans) I had each eye done one at a time because had VERY DENSE cataracts on...
Beth,I am so sorry to hear of your loss. I do know that you came to the right place though in choosing us to talk with. we may not have all the answers but we...
Asy may want to contact these people who are trying to start a Marfan group in Singapore. Their message was posted on the Marfan List today. John From: Willie...
My name is Jennifer and recently my daughter was diagnosed wtih Marfan. She is only 4 years old and is very confused about all the doctor visits and why they...
Jennifer, Children have it all over adults when it comes to accepting what is. Just remember to make your explanations calm and age-appropriate. I was...
Jeniffer Sally wrote a lovely e mail with some great ideas and support. I have 2 kids with marfans one 6 one 10. They are very accepting of things and i often...
Hello all, just a friendly reminder and notice that our usual Sunday night chat is on. Hope you will all join us. We will be open and here until 11pm eastern...
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