Reintroduction

I thought whilst doing the previous post that I should probably reintroduce myself since it has been several years since I started this blog. I also thought it was about time I shared some proper pictures of myself so people can see what I actually look like.

Out collecting leaf samples for my PhD

Hello, my name is James, I am 22 years old and I have Treacher Collins Syndrome. I have what I would consider a medium case of TCS in that I am affected by it and it is noticeable but it is not severe. I wear a bone conducting hearing aid in order to hear properly. Over my life I've had to have several operations such as to fix the hole in the roof of my mouth, a jaw distraction, insertion of a trach and feeding tube. (which was removed many many years ago) I currently live at home with my parents, my older brother and my cat and I'm about to start a 3 year PhD research project looking at the population genetics of native Irish trees.  My hobbies include playing guitar, playing video-games, watching tv, reading (books and graphic novels/comics) and football (both watching and playing). 

Malta

This me dressed up for my university graduation

This is me just before Tennants Vital 2012 standing in front of a poster

5000 views!

Well I've been thinking of doing this post for a while but I wanted to make sure I definitely had 5000 views since google/blogger seems to like signing me out and forgetting that I ticked the "do not track your own page views" option. It's hard to believe that I set this blog up over three years ago. I decided to set up a blog in the first place since I had started to look more into my condition including personal accounts/websites/blogs on the internet. I noticed that there weren't really many blogs out there especially not written by people of my age and those blogs/websites that were there hadn't been updated in quite a while. I guess I wanted (and still do) to raise awareness of TCS, hence why I did the reddit question and answer session a year ago. I hope I have and will continue to raise awareness not only that Treacher Collins Syndrome exists but that those who have it are people like everyone else with emotions, opinions, hobbies, friends, families etc.

Since I've started this blog I've had a number of people contact me about certain opportunities. I had a woman asking if I wanted to do a magazine interview sharing my life story in one of those tabloid magazines. I've also had someone ask me to essentially advertise their disability dating show for them hence doing their work which I refused. As I have stated before (I think) I'm not enabling ads on my blog  even though it would make me a bit of money so I'm not going to start doing someone else's advertising for them. Last year I was contacted by someone who was also working for a disability dating show possibly the same one and asked if I was single and if so would I be interested, I politely declined this offer as well. As much as I want to raise awareness I am not comfortable going on TV or doing an interview with some stranger, this blog lets me do things on my terms and at a pace of my choosing.

Thankfully it hasn't all been offers of dating shows and magazine interviews. Thanks to this blog I've become friends with someone with a lot of similarities and we have been able to share experiences. We also discovered that by coincidence our mums exchanged letters with each other when we were very young (my mum exchanged letters with other parents who had kids with TCS, obviously there was no Facebook in those days). I've also had some nice comments about my blog as well as some disagreeing with my opinions on things which is to be expected, it is the internet after all.

Whilst separate from my blog I think I should mention the Facebook group I set up-A group for people who have Treacher Collins Syndrome. It was the success and positive responses to this blog that gave me the confidence to set it up along with speaking with another person who has TCS about the groups that at that time existed on Facebook. It was on these groups that I first brought up the idea of setting up a group only for those who have it due to the large ratio of parents to people who actually have it posting. There was some definitely opposition to it, people didn't seem to like the idea of excluding parents/relatives etc. despite my reasoning that it would exist alongside those groups which do accept everybody. I decided to go ahead and in 2012 I set up the group, it now has 142 members and there have been numerous great discussions, debates and sharing of experiences. Granted it is sometimes frustrating being the admin of this group, despite having an explanation at the top of the group explaining that it is only for those who have it and providing a link to the main TCS group those who don't have it still join. This is frustrating especially when they do not say anything but don't remove themselves or they make a comment about how they know someone with TCS and ask for an exception to be made or for me to remove them from the group instead of them taking the two seconds to do it themselves. Still despite these minor frustrations I remain truly glad that I created this group and hope it continues to grow.

It's hard to believe that I've been writing this blog since 2011,  I am quite proud of it, hopefully I have raised awareness and maybe even challenged perceptions of people with TCS and similar conditions. Thank you to all those who have read my blog and will hopefully continue to do so, thank you to those who have shared it or commented on it and thanks especially to those people who encouraged me from the start. Here's to another 5000 views!