I feel really guilty that I'm so late writing about this since it happened way back in February!
Whilst I have this blog and the Facebook group for those who have Treacher Collins Syndrome as well as being a member of other TCS groups on Facebook I don't have any regular contact with anyone who has TCS in real life. I do have some vague memories of meeting other kids who have it when I was younger but those meetings were organised through our parents. I have become friends with a number of people who have it on Facebook but none of them live in Northern Ireland. However one of them, a young woman called Arti lives in England and we had conversations every now and again. She also helped me and gave me advice on that situation I mentioned before on this blog. She works for the charity Unique which help and raise awareness of people with rare chromosome disorders. She told me that they were organising an event for families with children with rare chromosome disorders which would be held in Belfast. We decided that we should try and meet up and fortunately we were able to to do so! I met up with her at the hotel they were staying in and we had a great conversation. I also met her boss and some of her colleagues.
It was definitely useful for me to sit down and have a conversation with someone who has the same condition I do but who also has had different experiences. We spoke about our home lives, our families, our work and our experiences with TCS. I think she is actually the first person I've met who has a BAHA (bone anchored hearing aid), so it was useful for me to talk to her about that. That said I'm still happy with my bone conductor hearing aid for now. All in all it was a great experience and would make me think about meeting other people with TCS or other facial disfigurements. The only regret I have about the meeting is that we didn't get a picture of the two of us together but hopefully we can change that the next time. She has given me her permission to share her twitter account:-https://twitter.com/Arti_K_Patel, she is much more active on twitter than I am!
Thanks for reading!
