This a reduced version of the original article, which can be found here.
I have lived with aniridia since birth and no matter how many specialised doctors you see or how many other people with visual impairments you meet, you still feel isolated, different, and misunderstood. This is the exact reason Aniridia Network is important.
There was a mixture of emotions leading up to the conference: excitement, fear, apprehension. I was excited to be able to engage with other people similar to me but at the same time I was scared of meeting these people because what if they didn’t accept me? What if I came away regretting going? All sorts of what ifs and doubts plagued me. Looking back, all of the fear and worrying was unnecessary, but hindsight is a wonderful thing.
The amount of information provided by Aniridia Network to help people was amazing, from attaching an agenda of the day all the way to giving instruction on how to get to the venue, and in a variety of ways, walking a with sighted guide, bus and tram information. I have never been to an event where that much thought and detail was given to help attendees. This helped ease my fear slightly and made me feel safer knowing that at any time I could check and re-check the information as much as I liked without bothering anybody.
I think I was more nervous in the lead up than I was on the actual day. I arrived at the Library of Birmingham at about 9:25am and found a seat at a table. Now, admittedly, at the start of the day I didn’t really talk to people because I was still a bit scared but that soon changed.
We started out the day with a talk from Helen Campbell who is a MsC genetic engineering counselling student at Cardiff University. Helen was looking at the experience of people with sporadic and familial aniridia and those experiencing further sight loss and the psychosocial impact this has. I found this talk particularly interesting as it is something I myself have experienced and gave me hope for the future and how aniridia and sight loss will be viewed and treated.
The next speaker was Emily Nash who was talking about the improvements that needed to be made to public transport. This again was a talk that really connected with me, as someone who travels regularly and has often been let down by the current system that is in place.
There were also talks from Vivienne Kit and Dulce de Lima Cunha from Moorfields Eye Hospital who were talking about research into aniridia. Next, Bernie and Abbie Reddington, who were talking about auditory processing disorder.
This was followed by lunch which got a bit chaotic because although we were told what was available, it was a buffet lunch which I personally struggle with even when I know what is available, I still wasn’t sure where what I wanted was. During this break I spoke to other people who were attending on a variety of things, from just getting to know them to talking about hospital experiences and what needs to be changed.
Emily Sterling, also from Cardiff University, talked about knowing that you’re not alone and the use of the internet in aniridia patients. I found this talk interesting; finding out about the different themes found when looking at this such as transformational and empowerment. Many of the quotes given about this topic were also very relatable. This one quote in particular resonated with me:
“in my teen years it was hard to accept my visual impairment”
Considering this talk was about knowing you’re not alone, I would say it was very successful; even hearing the research and quotes made me feel less alone. Following this we had talks from trustees and patrons as well as Permjit Bhachu from Focus Birmingham.
The conference ended, and many people joined the social at the Rep bar where drinks and conversation flowed before some of us went for dinner at the Novetel Gourmet Bar. Again, food, drink and conversation continued.
Overall, I thoroughly enjoyed my time at conference and as soon as I got talking to people all of my fear and apprehension disappeared. I would definitely recommend attending a conference to others – not only can you engage with research, you get to know other people and everything you have ever felt isolated, different, misunderstood, all seems to fade away just for a while.
I personally will definitely be attending more events that are put on by Aniridia Network, whether that be a meet up or a conference.
If you are considering attending an Aniridia Network event I would recommend attending even if you only go for a short time. The feeling of being around other people with aniridias is one that cannot be replicated easily.
