Hi all, I'm new to this yahoo. Have been a looker at the Marfan Digest for a while. Maybe this will be more lively. Looking forward to the chat rooms when they...
Hello there and welcome, it is nice to get to know you, I think now that we have twenty members chat is an option although it might be slow at first. We are...
I loved the picture of your family. It is a very nice shot of you all. Who in your family is affected with the disorder? You are all such beautiful people. I...
Hi, My name is Denese. My youngest of four was diagnosed at 4 years old with Marfans. No thanks to her pediatrician ( who kept saying she was average). I had...
Hi everyone Connie, I am the only one in our family with marfans(spontanious mutation). The people in the photo are: from left, my sister inlaw Tina, my...
... taking ... Hi Erin, I've just joined this group. My Daughter was diagnosed at 4, She started out taking 12.5mg atenolol since her 1st visit with her ...
How fast has everyone else grown? My daughter grew 13-1/4 inches her 1st year. Is this normal for marfs? She's 4'2" and she'll be 6 in Sept. She's also started...
Thank you for your post, it was moving and so true in showing how few people are diagnosed or miss diagnosed and don't even know they have it. I would love to...
Thank you for the information about the family seen in the photo. I know alot more about you now. I don't see any kids are you and your brother with kids yet?...
My daughter has been on Atenlol since 8 months old, she was on 12.5mg. She was just increased this year at age nine to 75mg. She has lens dislocation,...
My daughter is also tested regularly for glaucoma as this occurs often in Marfans. Please make sure your optomologist checks your eyes once a year for pressure...
HI Connie & All, Hope all is well with everyone! :) I hope im posting to this right can you just hit reply?!?!? lol I guess ill find out. I am on eastern time...
... few ... have ... at ... was ... Childrens ... an ... you ... years ... me ... letter ... a ... both ... has ... Hi Again, I doubt that I know more than...
Hi, nice to meet you. Just to let you know, they still use the term mutation but now they call it a new mutation. lol. Also I have learned or from what I have...
Thank you again for your wonderful posting job. You are so informed. My daughter has gratefully not gone through any marfans surgeries yet. They are coming...
Enter your vote today! A new poll has been created for the marfans_support_and_chat group: Is your marfans caused by new mutation or genetic inheritance? o...
marfans_support_and_c...
Jun 26, 2002 3:25 am
36
Enter your vote today! A new poll has been created for the marfans_support_and_chat group: When is the best time for a chat session to occur for you? (I live...
marfans_support_and_c...
Jun 26, 2002 3:29 am
37
I want to congratulate bhappybones, he has become a group moderator for the site. I also want to thank him for accepting the job. I think he will be a great...
I think it is time to make use of the chat room. How about if we try having some chat. Sunday nights are so far ruling in the polls. However, if we can get...
i am around 13 years old and have pectus (u know, that thing were your sternum goes inward) I have found that it colects dead skin and looks really, really...
I don't know if it will work, but have you tried Eucerin Plus lotion. It is for dry skin and hypoallergenic so won't or should not cause a rash to form. Let me...
This site is wonderful... I'm a 30 yr old female - my estranged father once made mention of Marfans some many years ago but my mother never mentioned it or ...
Thank you for saying such sweet things about our site. I am sorry to hear that you are being diagnosed with marfans, but you are in the right place. I am the...
I had alot of fun getting to know all of you that showed on our first night of chat. I will miss it next week as I will be out of town for six days, but I am...
I agree! Chat was a great opportunity and I hope to make it next week. I also hope to meet more of you through the chats. It helps put my mind at ease...
Hello everyone I would like to say hello to our new members, and to let you know that we have a chat night, on sunday's at the moment from 8:00pm to 11:30pm...
Hi. Just want to say hello to all marfanpeople out here, I am -for the moment- probably the newest member here (since I registered about 3 min ago) I like the...
I will miss you all while I am gone, you are all a special group of people, and I truly love you all. I will be back on July 8th. Can't wait to see you all...
Good luck Connie, speak soon. Remember anyone that's not quite sure about there time zone( what time to go online for the chat ), please e-mail me at (...
want2bteacher <want2bteacher@...> wrote: When is the chat night, since I would like to join....... Connie HoffmanYahoo! Groups SponsorADVERTISEMENT To...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
