23: My first TS Conference & my first TS Friendship

About 18 years ago while I was in my first year at university (now there is a scary though!) I got a clipping about the Child Growth Foundation (CGF) under whom the UK Turners syndrome support group was run at the time. I was sent this clipping by the aunt who was in the room when my mum told me the full extent of TS.

I got in contact and found out that there was to be a conference in Birmingham where I was studying. I did not have the money to attend the entire conference but the CGF was happy for me to come along and attend some of the sessions on the Saturday.

I was supposed to be on a bonding weekend for a University Society that I was on at the time but made my excuses and went off to the conference.

It was a fairly emotional experience being around so many other women with TS. I had been to a CGF conference with my parents when I was about 12 but not interacted with anyone else. The last time I had met someone with TS was when I met Lucy when I was eleven- I was now twenty years old.

There had recently been a controversy in the UK about the potential use of eggs from aborted foetuses. The woman who ran the TS branch of the CGF, who was the mother of a young woman with TS, was very excited by this development. She had been on a TV programme discussing this a few month earlier on Channel 4. I had actually gone on their programme ‘Right to reply’ saying it would have been better having a woman with TS speak about the issue, rather than a mother of a young girl (her daughter was six at the time). Needless to say I felt somewhat awkward when I saw her!

There was a report on the Turners’ Syndrome international conference in Canada, and recent research into TS.

It was a relief to meet the other women with TS and see how well adjusted and ‘normal’ they were.
When I got back to my student digs that evening I knew I had made the right choice how to spend the day. I had begun to find a community of other women with TS and understand I was very far from alone.
In 1995 the CGF put me in contact with a woman with TS in Edinburgh called Nula. We started writing to each other and swapped stories about our lives. I was impressed with her intelligence. After corresponding for several months we agreed to meet up in the spring of 1996 in Leicester Square with a group of other women with TS who had gone to see the musical in London. I did not go to the musical but did go for a pizza with the group. I was delighted to finally meet Nula. We chatted about the film version of ‘Trainspotting’ which had recently come out. When we went for the pizza I was sat next to a lady who covered her mouth when she spoke which I found a bit disconcerting! It was sad to see that for at least a couple of the women, their Ts had caused significant emotional issues. I would come to know some of these ladies over the next few years.

I am still regularly in contact with Nuala and occasionally go up to Edinburgh to see her. I find her a very inspiring woman. I enjoy the fact that we can discuss a wide range of issues such as veganism (Nuala is vegan and I am attempting to be as vegan as my coeliac disease will allow!), public transport policy in Edinburgh and London as well as issues around TS. My friendship with Nuala showed me other women with TS are highly intelligent, thoughtful and most significantly that I can have a friendship with other women with TS which is based on more than having TS