This section is all about my own, personal experiences with TCS and an insight to my world. I have split it into
two sections for convenience. |
Click on the small pictures to see a full size version.
I couldn't tell you how severe I have TCS as I don't know what the scale is! I have been told by some I have a fairly mild case, but by someone else that I have a fairly severe case! All I can do is tell you how it has affected me and maybe you can judge for yourself.
I have the usual anomalies typical of TCS: underdeveloped cheekbones, jaw and chin and sloping eyes. I have also heard that a large nose is fairly typical too, but I think I got away with that (you may disagree!).
I was born with only one outer ear and a cleft palate, luckily no cleft lip. I had my first operation when I was 18 months old to fix this hole in my mouth which caused food to come down my nose! My poor Mum used to spend hours trying to feed me!. I wear an air conduction hearing aid in my left ear. I am by no means profoundly deaf, but I cannot manage without my aid. Many people do not realise I am deaf, my speech is ok, I manage quite well with my hearing aid and my long hair covers my ears!
When I was born I was taken away from my Mum straight away. She didn't even see me until they brought me back a while later informing her that something was wrong but they didn't know what it was. It was not until some time later they actually diagnosed me as having Treacher Collins Syndrome. I was fitted with my first hearing aid when I was about 8 months old. When I was little I had to wear the box type hearing aid. My mum used to sew pouches into all my vests and dresses to hold it. Once my ear was big enough I was given a behind the ear aid. This was such a relief!
I have only had four operations including the cleft palate. My second was when I was 11 years old. A skin graft from my upper eyelids to my bottom eyelids. This one never made much sense to me as they were doing it to enable me to close my eyes a little better. Surely what they were doing would not make it better? Needless to say it was not a pleasant experience and it did not do the trick. Maybe if they had grafted skin from somewhere else it might have worked? I then managed to avoid operations until I was nearly nineteen years old! I went to a dentist who decided that my teeth needed straightening with braces and I also needed some teeth removed. As my jaw was obviously not very straight he referred me to Great Ormond Street Children’s Hospital.
It was here that I was informed that my jaw could be straightened which would make biting and chewing much easier for me. I had 3 teeth out and was fitted with a brace. Meanwhile I was told that if I wanted this surgery, I should have my eyes looked at by Moorfields eye hospital first. Here is where the second op comes in. They tried to correct what had been done before. Although I feel the scarring from this third op is worse than the second it has relieved me from alot of discomfort. I had skin grafting from the inside of my mouth to the inside of my eyelids. This prevented my eyelashes rubbing on my eyes as they had done since the previous op. The op wasn't a pleasant one, but once my eyes had healed the benefits were immediately obvious!
About 10 months later I had the major jaw surgery. This was a big op and involved being in intensive care for 24 hours afterwards and having my jaws wired for 6 weeks. I think it was a very worrying time for me and my family. It can't be nice to see a family member connected to masses of tubes looking like the lost a fight to Mike Tyson!! Everyone was very good to me and very patient. I was not in much pain and was back home in 5 days and ballroom dancing after 2 weeks (Yes - with "the jaws" on!) I had the jaws and stitches removed 5 days before I started university - now that was close!
The ops I have had have all been for practical reasons not for cosmetic reasons. Maybe if I had been at GOSH at a younger age I might have had more, I don't know. All I know right now is people seem to have accepted me the way I am and I am far too busy right now for any more ops!
I guess having Treacher Collins Syndrome, although may have inconvenienced me in many ways, has also affected me in some good ways too. I have probably made more effort to be a worthy person in peoples eyes, maybe hoping that my personality would dispel any fears of my condition; to prove that inside I am just as human as the next person.
My Mum used to call it 'fear of the unknown'. When I was a child she used to explain to me that the reason that people may ignore me or avoid me was because I look
So, 1996 was a good year for me, my boyfriend Mark proposed to me in November on our fourth year anniversary. (Yep one knee, diamond ring, the works!!). In May 1997 We bought a house, and in June 1997 we took in two lodgers, Jake & Ellie, two of the cutest moggies you ever saw!
I am now working as a software consultant / programmer for a small software house in London called Syslogic. I hope all this proves that there is no reason why having TCS should prevent you from doing what you want in life.