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Welcome! We appreciate your comments and suggestions!
Be sure to post your introduction and ask those important questions at the Crouzon Support Network listserv!
| Name | Michael Everitt |
| Comments | Hi, my name is Michael Everitt and i am 31 year old male, i was born in Walsall, nr Birmingham, England in 1979. I have Crouzons Syndrome and have had many operations throughout my early life up until my late teens when i decided enough was enough and wanted to get on with my life. I also suffer from a skin condition called acanthosis nigricans which a common partner of the crouzons. Life hasn't been easy but i can't complain i have a very loving and supportive family and have always tried not to let it get me down and tend to think that their is always someone less fortunate than myself. If anyone in the same situation wants to contact me please feel free. |
| Name | Ada |
| Comments | my granddaughter is 5 y,o and has had severy surgeries. This year she had facial,cranial,eye.nose and oral surgery done at the same time. She have pins in her head that connected her cranial bone to her jaw bones, She is doing well, I thank God for the knowledge he has given to the drs. |
| Name | April Green |
| Comments | Hello- My 2 year old son has CS, I live in Oklahoma and would like to find some kind of support group gor us.I also have crouzons syndrome but my son has been severly affected.Any type of information would be appreciated. |
| Name | Auni Bt. Abdul Halim |
| Comments | Hai...I'm Auni...now my age only 5 years old...I'm happy but shy to make a friends a round me.... |
| Name | Chelsea |
| Comments | I'm 23 years old and was born with Crouzon Syndrome. My boyfriend actually found this site for me and told me about it. I cannot tell you how excited I am to be able to possibly connect with individuals with Crouzon Syndrome or know someone with it. I'm here for support and to answer any questions parents or younger individuals with Crouzon Syndrome. I had a great support system growing up so I know that it's always greatly appreciated to have someone to talk to and voice your concerns with. So please feel free to email me anytime. |
| Name | Michele Dozier |
| Comments | Hi, My partner has Crouzons Syndrome and has endured numerous surgeries over his life...We now want to start a family of our own ( I already have 2 children)he is concerned that Crouzons may get worse with every generation and is worried his child may be worse than him... I want to reassure him and help him understand. He has endured great hardship as a child and he is worried for his child...but I know we will love it no matter what.. Is there anything I can do before I get pregnant to lower the chances of our child having Crouzons Syndrome and help my partner cope?? |
| Name | Talitha |
| Comments | Hello all. I was born with Crouzons. I am now 22 I have had multiple upon multiple amounts of surgeries. But now that I am found to be a good stopping point from the surgeries, I have been thinking about how when I was younger what it could have been like to have a supporter that had already gone through all the 'stuff' i was going through. So therefore, I am looking to find a way of being a support for younger aged children diagnosed. I was just wanting to know if you guys know of a certain plan or way in which I could do so. I live in the dallas area. Thank you! |
| Name | Icey |
| Comments | Hi, my name is Icey and I am a 29 year old female with CS. I came across this site when I was trying to google search some information about having a baby when you have C.S. I really would like to have a baby one day, but I am just not sure what are the chances of my baby having Cruzon. No one in my family has had it, so it is possible that my baby may not? |
| Name | Brenda Vasquez |
| Comments | Hi, My sister was born with Crouzon Syndrome. She is 22 years old and lives in Chicago. She is getting ready to attend NEIU this fall to become a social worker! We are trying to find a support group here in Chicago so that she can get out and meet people who are more like her. |
| Name | Sarah |
| Comments | Hey everyone, I'm 22 years old and was born with Crouzon's Syndrome. I've had over 50 major surgeries and have also had about 7 cardiac and respiratory arrests at Seattle's Children's Hospital in Seattle, Washington...if you guys have any questions for my parents or myself, please don't hesitate to ask no matter how personal it may seem. |
| Name | Abby Lamb |
| Comments | Hello everyone! My mother was diagnosed with crouzon's when she was a toddler she had many experimental surgeries at the university of Minnesota then when she was 16 they sent her to California to get a new face. She later married my dad and had 4 daughters. She is 49 now and healthier than ever. My oldest sister Katy was the only one of us 4 who were born with the syndrome. She was not as severe and never had surgery. Now she has two little boys who are 2 and 4 that both have crouzon's. My older nephew has had 3 surgeries and getting ready for the next. The baby just had his second and has a long recovery ahead. My sister is now having constant migraines with no relief and they have also found a tumor in her brain. The doctors have no answers. Please keep our family in your prayers! |
| Name | Yolanda |
| Comments | Yes,My daughter is Jakeyia Ragland,She has crouzon's she is now 13yrs.old She is in the hospital in B'ham Al.She is haveing trouble with seizures.The doctors are trying to get them under control,If there is someone that has had the same problems please give me some insight and suggestions about this problem. Yolanda. |
| Name | laura |
| Comments | i have a 17 yr. old son with crouzons who's just like every other 17 yr. old just with a few ticks |
| Name | Michelle |
| Comments | Hello! I am 33 and have Crouzons. I am pregnant for the first time and seriously uncertain about carrying to term for fear of passing it to my baby? I have often heard that Crouzons "can" skip a generation and am looking for advice on what I should do? |
| Name | carolwii.wii |
| Comments | Excellent place to know details. |
| Name | erin |
| Comments | I have a son that has crouzons. he is 19months old and has been though alot aready. i am wanting your advice on what else to be ready for. |
| Name | Trish |
| Comments | Hello Everybody, I am 43 years old. I was born with Crouzon's and Apert. I have been told that I am one out of thousands. I have had 12 surgeries on my head and face. I have had the last CT Scan and my head doctor told me that my bones are the age of 60 to 80 years old. And it's getting worse. I really like this. I have been looking for so long. I was just about to give up. I live in Dallas, Texas |
| Name | jonathan |
| Comments | I have crouzons. I was born in 1972, in upstate New York. I've had 7 multi-procedural operations done in my life. Now I live Pennsylvania. All my operations were done in Canada. I leed a normal life, and try to enjoy life everyday. |
| Name | Laura |
| Comments | I have a 19 year old that has crouzans. I am glad there is a group out there. I am hoping that my son can get to know other people that have the same thing that he does. |
| Name | Darlene |
| Comments | Hi. I live in Northern Ontario and was also born with Crouzons. I've been through 10 operations at different times in my life, to the point of having my forehead rebuilt with 5 of my ribs. I am 52 years old,(Shhh, don't tell anyone) and been married for almost 25 of them. I suffer with headaches almost constantly, but keep on trying to do the daily things that have to be done. Awesome website, and great resource. |
| Name | courtney |
| Comments | Hi! I'm a 31 yr old female born with Crouson Syndrome. I would like to talk to other people that have Crouson Syndrome too. |
| Name | Donna |
| Comments | Thank you for this wonderful resource on Crouzon's! |
| Name | Janell |
| Comments |
| Name | James Carter |
| Comments | I have Crouzons I am 45 years old. When my daughter was born in 1986 was the first time that I learnd that other people were affected and that they was a name for it. I would like to become more involved in this matter. James Carter |
| Name | Candar |
| private, sorry | |
| Comments | Thank you for this site, it helped me when I was deciding if I should or should not undergo my reconstructive surgery. :) I am keeping a blog about crouzon syndrome at http://candar.wordpress.com |
| Name | Carrie |
| Comments | I utilized this website in a graduate course for Speech Language Pathology. I appreciate all who shared their stories and their pictures. Thanks again for sharing your information. |
| Name | Nancy King |
| Comments | Hi All, It's been a long time since we said hello. We live in upstate NY now. Rachel, a happy 14-yr-old, is having a Laforte I and nasal bridge work in June. Our insurance has denied the surgery. We are appealing. Any advice? |
| Name | janet |
| Comments | Hi our daughter Emma as crouzon she is 8 years and the apple of our eye,i was just looking through crouzon sites and found yours brilliant!!! We dont get much web sites like this here in England so well done,if any one would like to email me any other parents please feel free. |
| Name | Jen |
| Comments | My name is Jen, I am in my last year for pre-med studies at Indiana University. I have Crouzon's Syndrome, and I wasn't supposed to be able to see, or hear by the age of 2. All of you bringing up children with the syndrome, please understand miracles do occur there is no limit to what your child can do as long as she/he keeps faith in themselves |
| Name | Yolanda Ragland |
| Comments | Yes,I'm the mother of an eleven year old with crouzon's. She has had 47 surgeries,and we are getting ready to go to St Paul Minnisota for two more surgerys. We are from Alabama.We have been to many different hospitals for her care. We will leave for Minnisota on Jan 3,2007.My daughter is a very sever case of crouzon's.I will be glad to talk to anyone to let them know the things that we have gone through on our journey. Keep our family in your prayers. Yolanda |
| Name | Holly |
| Comments | Hi, I have the RED on and are looking to see if I can find anyone else with crouzons. feel free to email me! -Holly |
| Name | shannan |
| Comments | Hi my name is Shannan i am a 20 year old female from michigan. i was born with crouzons,i am married now and i have been trying to find people who has the same thing as me and i would like to chat. its nice to talk to someone that has something in common with you. if you want to chat please email me. shannan |
| Name | Kipper |
| Comments | Hi! My name is Kipper and I am a 27 year old female from the US. I do have Crouzon's. I have experienced some of the ridicule that others on this site have also endured, but I mostly feel very well adjusted to a "normal" life and am very happy! I would love to talk to any of you if you are interested in sharing your stories or would like to chat! Take care! :) |
| Name | Alastair |
| Comments | Hi, im from the UK and have just found this site, it looks really cool. |
| Name | sean haddock |
| Comments | Hi, my name is Sean I was born in 1971. I was also born with Crouzon's syndrome. I am looking to talk to people with the same stuff as me. |
| Name | Paul De Coeyer |
| Comments | Hi all, I'ts been a long time wev'e been here. I would like to inform you that my Daughter Mieke is been operated of her Syndrome and that everything is worked out fine. Many regards from The Netherlands Paul. |
| Name | rebecca |
| Comments | it's great to see all those cute and happy kiddy pics. My husband has crouzon's and we were lucky enough to have a 3 year old son without it. I am now pregnant with our second child and it's a huge relief to see that crouzon's doesn't hold these kids back. they look sooo happy :) |
| Name | Stephanie Houser |
| Comments | Hi, I am currently six months pregnant and they have diagnosed the baby with Crouzon Syndrome (possibly Aperts). We will not know much until she is born. I have really appreciated this web-site because I have never been faced with this type of thing before. I know that no matter what happens I will love my baby girl beyond belief. Thank you. |
| Name | Kuayla Turner |
| Comments | Greetings I am so very delighted to find this wonderful web site. Crouzon's syndrom has attacked my family for many generations. Although I was blessed not to have it, many others in my family do. I'm trying to find out as much information as I can about crouzons any additional information would be a great help. |
| Name | jijou |
| Comments | hello from morocco. i'm very glad to see that there's a place in the world that persons respect the crouzon people. because they are human and they need to be loved just like eveybody else does. yes i've crouzon syndrome i've 21 years old and the next 4 january i'll get 22 years. this 22 years was so terrible for me. ive heard all kind of insults and critics. its was very hard but now i've a job and most people respect me because i've got something that most of theme have not (job). i hope to meet someone like me and to discuss about every thing and to share our pain with other people. just send me letter.i'll answer to all. (thanks god). sincers saltations. |
| Name | Dawn |
| Comments | New Mom to my cute 10 week old son who has Crouzon Syndrome. We are going to see a Craniofacial team soon to see what we need to do to stay proactive. Trying to find families in the So. Cal. area who have this syndrome. I look at my beautiful boy and cry, not knowing what the future has to hold for him. I love this website, it has been very helpful with it's information. Hoping everyone is healthy and happy! |
| Name | janet |
| Comments | Hi our daughter emma has crouzon syndrome she is 7yrs.Brousing and found your site brilliant!!!!! |
| Name | stephanie |
| Comments | Thank you for this wonderfull information on crouzon syndrome, we have a 7 year old boy with this syndrome in SOUTH AFRICA, WE HAVE WALKED THIS ROAD IS THERE ANY OTHER CROUZON SYNDROME IN SOUTH AFRICA..........? CAN WE GET EMAIL EACH OTHER. |
| Name | Talitha |
| Comments | Hello, My name is Talitha *as you can see* and well I am 17 and a senior in high school. I was diagnosed with Crouzon's at birth, after the thought it was water on the brain. But luckily i have a MILD case, to where my doctor even questions the case. But really the only visible thing is my eyes, and my nose. So for that matter, on August 25th of this year, I am having a rhinoplasty which is a nose job and then my doctor suggested on doing a jenoplasty *chin job* because that's what he does on other crouzon's patients... and well I'm nervous as all get out because I haven't had a surgery in about 5 years... so please pray for me... if you don't mind... I would greatly appreciate it... Also, I realy admire the site... I've known about this site for about 5 years or so... *before it was re-done* IT's really neat.. |
| Name | Tina |
| Comments | hey im 22years old and i have crouzon syndrome. I tryed before to see if i could get in contact with someone that have what i have. i would like to chat with someone just like me. u could email me and thank u for reading my comment. take care |
| Name | brendalleephelps |
| Comments | its real great to have this |
| Name | malaga |
| Comments | Thank you very much for the info I was looking for, and Greetings from Malaga (Spain). Antonio |
| Name | Tonny Wiericx |
| Comments | Hello, It was nice to read about childeren with syndroom of crouzon. Because my brother, he's now almost 61 years old, has also crouzon. He is the second child of a family with 10 childeren, my parents were very afraid that someone of their childeren get also a child with crouzon. Well, they have 20 grand - childeren and one has an illness, but not crouzon. Also the childeren of their grand - childeren till now, don't have crouzon. I hope that you can read my mail, because my english is not so very good. Greetings from Tonny Wiericx. |
| Name | Sandy Woodworth |
| Comments | I'd enjoyed the new web site, it gives you alot of info. |
| Name | Debbie Oliver |
| Comments | Welcome to the Crouzon Support Network! We're happy to have you here! |