By Susan, the parent of a 4-year-old daughter with aniridia and WAGR/11p Deletion Syndrome.
I am so glad I went to this year’s Aniridia Network UK (ANUK) annual conference. I had almost decided to give it a miss but it turned out to be unmissable! A truly positive experience which gave me hope; a real feel good experience!
There were so many highlights for me. I was thrilled to hear the keynote speech from our new Patron Veronica van Heyningen CBE, even if she did get a little bit too technical at the end for me!
I think it is wonderful that Veronica has come on board; with her in-depth knowledge and her notoriety she can only bring great things to advance ANUK. In fact, I was really excited to hear that she has already started to appoint a panel of experts to assist the charity. I am looking forward to her confirming who will be the specialist in WAGR/11p Deletion Syndrome.
As my 4-year-old daughter has communication problems, it is difficult for me to know how her aniridia affects her in daily life. The conference was yet again a great opportunity for me to meet other people with aniridia to learn about how the condition affects them. It was also a valuable opportunity to meet some other lovely WAGR families; there are so few of us that I am glad that we are able to ‘piggyback’ the event each year!
My lasting impression from the conference is the positive vibe that surrounded the day. ANUK has evolved a great deal, even in the short time that I have been a member. I believe this has been driven by the obvious passion and vision of the trustees for the organisation. I found this inspiring and hope to organise a social meet-up in the Midlands during the year.
At the conference, we saw first-hand that people with aniridia can have a fulfilling life, career, relationships etc and that new and exciting treatments are already being researched and trialled to establish a long-term solution to the corneal damage caused by aniridia.
When listening to the presentation by Melanie Hingorani, ANUK’s newly appointed Medical Advisor about therapy and surgery, it struck me how many of the aniridia related complications my young daughter already has; ones that generally do not appear in childhood. Instead of feeling scared, I feel the conference brought me hope and whatever happens, through ANUK I am developing a network of friends and contacts who will be there to advise and support us.
What did you think of Conference 2013? Tell us in the comments below or send us an article of your own to publish.
More photos from the day