The Treacher Collins Family Support Group Forum

Welcome to the Treacher Collins Family Support Group Forum.

The Forum is here for TC Families, Individuals, Professionals or anyone who has an interest in Treacher Collins Syndrome to contact others.

Please use it wisely as it will be monitored and removed if used otherwise!

My Family Has TCS

by Joanna

My dad has TCS and so does his two brothers. His Sister does not have it. My dad then had me and then my sister. I have TCS but my dads is much less noticable than mine. My sister does not have TCS.

My two uncles had kids. My Uncle Ed had one little girl and She has TCS. Her TCS is more noticable than his. She has children now A girl and two boys. The girl has tcs but she has a normal chin. and the older boy has tcs with a normal chin too. and the youngest boy does not have tcs.


My Uncle ricky had a boy and then later a girl both with TCS. The boy is about the same degree as my TCS. The girl had a greater degree. . So I have a family of people who know how I feel when people look at me like I am mentally retarded.

Posted on May 6, 2009, 6:30 PM

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TCS

by

If you or know anyone in Columbus, or anywhere in Ohio. Please email me. I have met many people with TCS all over but I'm the only one in Columbus with TCS that I know of.

Meg
www.piczo.com/imfullofdreams

Posted on Jul 3, 2006, 7:51 AM

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Treacher Collins Syndrome

by

This is to give hope to those who have TCS, which I have. I was born with no absent ears, no cheekbones, drooping eyelids minus bottom eyelids, high roof in my mouth, recessive chin. Another complication was that I also had severe sleep apnea, but now use a CPAT machine, which works great!!! Now after 45 years, my surgeries are drawing to a close. Thanks due to the efforts of one doctor, Dr. John M. Hiebert of Kansas City, MO. It is my hopes and dreams that noone will have to have as many surgeries, which I have had and all of my information on me I had given permission to my doctors to help others with TCS.

Posted on Jul 21, 2005, 8:24 AM

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son with treacher collins syndrome having by-pass heart surgery

by

saw your site my son robert kerr is having 4-way bypass heart surgery on aug 10 2005 he is 47 yrs old very small would have never thought this would happen born with treacher collins september 28 1957 attitude great has great job very self-sufficient but my heart pains every day as a mother please remember him in your prayers i am libby bbsoaps@insightbb.com thanks for listening

Posted on Aug 5, 2005, 3:33 PM

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www.tcconnection.org

by

If you are not already familiar with this organization...

Posted on Jun 8, 2005, 6:45 AM

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Be wary of TC Connection

by Connie

There are wonderful and well meaning folks within the organization, however some of the information is delivered as if it is a medical advise. No one on that list is qualified to speak beyond their own personal experiences. Always seek the guidance of a qualified medical professional with experience with the disorder.



Posted on Nov 25, 2009, 11:37 AM

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3 year molars for children with Treacher-Collins

by

I am a service coordinator for a program for young children with special needs. A family I am working with has a 2 1/2 year old boy with Treacher-Collins. They don't have a computer so I'm sending this question out on their behalf:

Her son seems to be getting his three year molars and is very uncomfortable. A dentist told her that these teeth especially could be difficult for children with Treacher-Collins. Have any parents had that experience? If so, what was done? Did some teeth have to be extracted?

Thanks for any responses!

Posted on Jun 24, 2004, 7:45 AM

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POP-UP APOLOGIES

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If when visiting the Forum you have been "attacked" by the wonderful GAIN Publishing pop-ups then please accept my apologies, although this is entirely beyond my control at the moment. In due course I hope to get the forum onto our own webspace and get rid of the adverts altogether. In the meantime I recommend Ad-aware (free) from http://download.com.com/3000-2094-10045910.html?legacy=cnet if they keep annoying you as much as they annoy me...

Posted on Jun 7, 2004, 7:15 AM

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plastic surgery (facial)

by

Have any members children experienced facial surgery,as my daughter will be needing surgery in the near future.I would like to collect as much information as possible.

Posted on Apr 4, 2004, 6:50 AM

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New father seeking help

by

My daugter was born in Sep. of 2003 with TCS. She has servere hearing loss and lacks any of the middle ear sucture and is missing all but a smaal bit of her ear lobes. She is cute as can be but I want to know what can be done for her in order for her to live a more "normal" life (ie better interaction with me, her sister, who does not have TCS, and the community). PLEASE, do not take offence to the term normal I did not know how else to put it. We have gotten her a BaHa hearing band and I can tell a big diffance in her reactions with it on. What have some of yall found out to do?
Thanks,
Jay & Mia

Posted on Mar 21, 2004, 10:15 PM

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Re: New father seeking help

by

Hello Jay and Mia.

Greetings from the UK. Our daughter Hazel was born in 1991 with TC, until then we had never heard of it but within days a genetisist had visited and pronounced that I had very faint signs. From about 6 months Hazel was fitted with a Bone-conductive 'alice' band then 5 years ago she went through the ops to fit her with a BaHa and wow what a difference that made. This has given her near-normal (yes you do have to use that word) hearing - but and here's the down side UK-side, if it breaksdown then it is weeks before it gets replaced and in the meantime she uses another alice band.

The best thign we have found is to get involved with whatever support group you can find, we are on the committee of TCSFSG and also make use of the UK National Deaf Children Society and the local Deaf centre. I think one of the hardest things is to accept that there is a problem and to accept whatever you can get hold of in terms of support - don't be afraid to ask for or accept help.

Best wishes

Mark and Sandra (with Hazel and Jonathan)

Posted on Jun 8, 2004, 1:38 PM

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Are there are support groups that meet in Memphis, TN

by

I am a pediatric nurse who is trying to find a support group in Memphis, TN for a youg mom with a baby boy who has Treacher Collins. If anyone can help please contact my via email.

Thank you and God Bless

Posted on Feb 12, 2004, 12:09 PM

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BAHA

by

My daughter is now fifteen (15)years old in a single family home. She is very much hoping that someday she will be able to wear a BAHA. But with my financial situation, I cannot afford to pay for it. Private medical insurance, Medicaid and Child Care Connection do not cover it.

I am interested in knowing where I can go for this kind support.

Thank you for your interest and response to my post.

Please e-mail me.

Sincerely,

Norma

Posted on Jan 16, 2004, 4:28 PM

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