Cleidocranial Dysplasia Member Introductions

Cleidocranial Dysplasia
#21

Hi, I have CCD and I also have 3 girls with CCD. I always thought I was the only one with this condition. I was happy to find out there are support groups, so I can talk to others. Right now, I am focusing on the dental issues of CCD. My 9 year old has not lost her baby teeth yet, and next week hopefully we will be starting the process.

I am here to support others as well as learn from others. It gives me hope to know that other families are dealing with the same issues that we have.

Thank you!
Andrea K.

#22

I’m Stacy, married to Grant (with CCD - first in his family) and Mom to two boys, Trey and Quinn both with CCD.

#23

I have mild CCD and one of my children also has CCD

#24

My son was born in August of 2003 with CCD. No one else in the family has it so we want to know everything we can about it.

#25

I have CCD as do my father, brother, 4 of my 8 children, and one of my 6 grandchildren. My grandmother, great aunt and their father, who was my great grandfather, also had CCD. I have researched CCD since the birth of my firstborn 30 years ago. Before she was born missing clavicles, we never realized that our “family traits” of large soft spots and extra teeth were a syndrome.

#26

I am the first one in my family with the condition. I have two wonderful children. One with CCD and one without. I would love to connect with anyone with the condition.

#27

My daughter is 8mths and has CCD. We have no history in our family so as much as I can learn about it and help other famlies the better,

Kristen
Kansas City

#28

My daughter has it.

#29

I, along with my son have Cleidocranial Dysplasia. I’m 37 yrs old and it took them about 5 yrs to figure out what I ‘had’. I had a nightmare with specialists, dentists, orthos, etc but from those mistakes I have at least learned a few things and so far it has been a easier ride for my son.

#30

I was born with CCD first one in family, I have two sons one with CCD and one without. My Granddaughter born to my son with CCD , also has CCD

#31

Hello, My husband and our youngest son have CCD. I am looking for more support and information. The doctors around here don’t know much about it and it would be helpful to be able to find some that do.

#32

Hello,

How old is your son? Mine is 16 already! Both my son and I do have CCD. Where do you guys live?

Evonne

Evonne Strohwald, Program Assistant
Hospitality Management Department
Vancouver Community College
604-443-8533
estrohwald@vcc.ca

LogansMama cleidocranial-dysplasia-cpt2239@lists.careplace.com 03/21/08 8:10 AM >>>

#33

I’m a 48 year old comedian with CCD, have been in other groups, but lost touch. If you remember me, please feel free to contact me again. I’m based out of Nashville, TN.
CCD is part of my comedy show, I’ve been telling people about it onstage now for more than 20 years. I wasn’t diagnosed until I was 12, so I was at the age where I felt like an alien anyway and the diagnosis was a great relief. I finally understood why I looked the way I did, and why so many things that other kids took for granted were so difficult for me (push-ups, anyone?)
I’ve had great success with weight training to change the shape and functionality of my shoulders, would be glad to pass on anything I’ve learned…

#34

Hello Emmett,

yes I remember the push-ups! I was so stubborn that even though it was
probably 10 times harder with no collar bones I would do anything so I
wouldn’t look weak when I was a teen! My son is 16 and his
back/shoulders are a mess and I’m really curious as to the weight
training you have done.

Evonne
estrohwald@vcc.ca

Evonne Strohwald, Program Assistant
Hospitality Management Department
Vancouver Community College
604-443-8533
estrohwald@vcc.ca

Emmett cleidocranial-dysplasia-cpt2239@lists.careplace.com
03/25/08 6:28 PM >>>

#35

If your ever in Columbus I am sure my Son (CCD) would love to see your act.
He was DX at birth…his father also was CCD

Kim
kawalker@columbus.rr.com

----- Original Message -----
From: “Emmett” cleidocranial-dysplasia-cpt2239@lists.careplace.com
To: kawalker@columbus.rr.com
Sent: Tuesday, March 25, 2008 9:28 PM
Subject: Re: [cleidocranial-dysplasia] Cleidocranial Dysplasia Member
Introductions

#36

I’ll make extra effort to break in to the Columbus comedy scene…I’ve done shows in Akron, Cleveland, Lima, Toledo, Dayton, and many smaller towns whose names have slipped into obscurity. Of course, if you want to call a club and recommend me…


(pg-13 rated…)

#37

Hi. My name is fran and my 3 month old son has a possible diagnosis of CCD. He was born with his fontanel totally opened and his clavicles look fractured but they are not. ALl the doctors definitly think he has it. We are waiting for his results. Can anyone please educate me about this disorder? My husband and I both do not have CCD. I read so much on line but I never heard from someone who has it or knows someone who has it. I need to know my baby is going to be ok. Thank you!

#38

Founder of the TransGlobal Health Community Center at http://transglobalhealth.com

#39

I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat :confused:

#40