Hi! I joined this group yesterday, and I am going to introduce myself. I am a 18 years old girl from Norway, who is born with Goldenhar Syndrome. I am also a...
Hi Jorån: Welcome to Stitches!! It's good to have a new member.. We are a small but very close knit and caring group of people who share the common...
Gisela Dossey
giseladossey@...
Oct 24, 2001 2:39 pm
941
Hi Joran, Welcome to our little group. I am the old guy who is married to Gisela Dossey. We actually met on the Internet through a support group for people ...
John Dossey
jdossey@...
Oct 25, 2001 12:12 am
942
Welcome: this is a great place to get information and support. I am an oldie (57yo) but still somewhat active. I have never had an oppurnity to meet or even...
maryo55@...
Oct 25, 2001 5:37 pm
943
Hi! Thanks for the nice mails. I have some questions to you: Do you know about pages about your syndromes? I think it is interesting learning more about other...
There are no "stupid" questions. Ask anything you care to. This is kind of a quiet group but if you need something or have questions everyone speaks up ... ...
Hi there: There are no stupid questions only stupid answers..... In learning to handle the way other people look at me, it is an ongoing process. As I have...
maryo55@...
Oct 27, 2001 9:45 pm
946
Hi Jorån, First of all, NO questions are stupid. I am Kristi and am 37 years old and have a condition called arhinia. Arhinia is the absence of the nose. It...
Hi there Kristi!!: Girl!! Where have you've been hiding?? LOL. Well, I may say, where have we all been hiding!! Busy as we could be, I say. Nice to hear from...
Gisela Dossey
giseladossey@...
Oct 28, 2001 7:36 pm
948
Hi Jorån, I might be the oldest member of this group that has never had ANY surgeries at all. I am 56 years old, and grew-up in a very very poor area of the...
John Dossey
jdossey@...
Oct 29, 2001 3:54 am
949
Hello Everyone.... I'm new to this group, and thought I would introduce myself! I already belong to another Crouzon Support Group, but thought it would be...
Dear John, I'm new to this group, and just read your letter about you being the oldest member without any surgery. Well, I'm only 32, but I haven't had any...
HI Judi, Wow, your "story" sounds exactly like mine, except I am older than you. I am 56, but have 'untreated' crouzons, but I guess it would be considered ...
John Dossey
jdossey@...
Nov 6, 2001 1:51 pm
952
Welcome to the group...I too am fairly new to this group but not the youngster any more....I will be turning 58 (ouch) this month and that in itself is a bit...
maryo55@...
Nov 6, 2001 8:17 pm
953
Hi Judi, I am from MO.. I live near KC. I had all my surgeries done here in KC. Some of it done by local surgeons and some done by Dr. Tessier. I declared ...
John, Thanks for your letter. It is so interesting to me to meet others who have shared some of the same experiences as I have. It does sound like we have a...
Hello, Welcome Judi.. First of all I am pretty queit on here. I came here because I have a child who was born with a bilateral cleft lip and palate. You can...
Chapman
elchap@...
Nov 7, 2001 3:54 am
956
Hi Judi, You ask so many of the same questions I have asked myself over the years. I can address them from my own personal feelings, but I think everyone is ...
John Dossey
jdossey@...
Nov 7, 2001 6:10 pm
957
Hi Judi!: Welcome to this small but great group of people. We are at times quiet but when someone needs us we are here. I'm Gisela Dossey, born and raised in...
Gisela Dossey
giseladossey@...
Nov 8, 2001 2:26 am
958
Gisela, Thanks for your letter... I was able to relate to it so well. I just got done writing John a very long letter... not much info, but long, none the...
Hi everyone, I am just joining this group, I'd like to introduce myself. My name is Yeti, 33 years, from Indonesia, I have 3 children that one of them has...
Yeti Widiati
vpme17@...
Nov 8, 2001 11:24 am
960
Hello Yeti, I live in the midwest in the USA. I have crouzons and I know how your daughter feels. I felt that way when I was very young. But I was very ...
John Dossey
jdossey@...
Nov 8, 2001 1:23 pm
961
Welcome Yeti!: First of all, your English is WONDERFUL!! I can relate to you because English is not my native language. I speak Spanish. My brain thinks, ...
Gisela Dossey
giseladossey@...
Nov 8, 2001 2:56 pm
962
Hi again Judi: No need to thanks for my letter. I remembered when I joined a previous Crouzon's support group I was so hungry for information, I wanted to...
Gisela Dossey
giseladossey@...
Nov 8, 2001 3:12 pm
963
Dear Yeti: Saw you letter to stitches and had to answer. First Welcome to this woderful supportive group. Second your English is understandable so no ...
maryo55@...
Nov 8, 2001 9:12 pm
964
Hi, I grew up in the suburbs and as you know still live there. Judi, I live in Raytown. I have always felt a part of the world. I am a family member ...
Hi Yeti, Welcome to the group! I am Kristi and I am 37 yrs. old and was born with a condition called arhinia, which is absence of the nose. To learn more...
Dear John, Gisela, Judi, Kristi, Mary. Thank you for your quick response to my email. Thanks also for your support to me, I think this group can fulfill my...
Yeti Widiati
vpme17@...
Nov 11, 2001 12:49 am
967
Hi Yeti, I am glad Ghina has had improvement. It sounds like the doctors did the operations to release the sutures of the skull to allow it to grow, and make ...
