Yesterday, the RPFB engagement team attended Sight Village which was held at the impressive Royal Armouries in Leeds.
During the morning Denise and I met and spoke to lots of people, many of whom are living with an inherited retinal dystrophy such as RP, or Usher syndrome. We were able to tell people about our services, provide information and simply catch up with some of RPFB’s long term members. We were also able to make connections with many health and social care professionals, in particular local sensory support teams and teachers.
In the afternoon we held our final RP Seminar of the year in the tower gallery on the third floor of the venue; there were 40 people in attendance, which was maximum capacity for the venue.
We had an exciting agenda for the afternoon, with Mr Kamron Khan, providing a talk on inherited retinal dystrophies and genetic management / testing. Mr Khan is a Consultant Ophthalmologist with a special interest in inherited eye conditions and works both at St James’s hospital Leeds and Moorfields Eye Hospital in London. We were therefore very grateful that he found the time to, at short notice, to come along and talk to us and answer questions.
During the Q&A session we had questions around research and the potential for treatments, genetic testing the risks of inheritance and low vision aids, to name but a few. A very important question was raised by someone in the audience about stem cell treatments abroad, which we hear about more and more frequently at RPFB. Mr Khan was able to explain the risks of unregulated stem cell therapies and their potential effectiveness. These types of treatments are both costly, and have no research papers published to evidence their effects, either beneficial or detrimental. In the UK we have very strict ethical guidelines governing medical research and treatments, but this is not necessarily the case in every country.
Mr Khan’s talk was followed by a presentation from Dr William Rhys Jones. Dr Jones is a Consultant Psychiatrist in Leeds, and he gave us an inspirational talk on inherited sight loss from a doctor’s perspective. The twist being that Dr Jones has a cone/rod dystrophy himself and he gave us a warm, funny and emotional insight into his diagnosis, childhood and his decision to choose medicine as a career. He spoke of his journey through medical school, and some of the difficulties his vision caused, how he overcame any obstacles, and the way he is able to use his own personal experience when working with his patients in clinic.
As well as our two wonderful speakers, Denise and I were able to offer additional information and support and we’ve been able to follow up after the event with information on referrals to specialists and genetic clinics.
The Leeds seminar concluded our programme of Patient Information Days and seminars for the year, but we are currently working on plans for events in 2017 and we’ll be announcing the details once we have confirmed dates and locations.
I’ll be attending the World Sight Day event at Moorfields Eye Hospital in London on the 13th October, and the engagement team will be at Sight Village London at Kensington Town Hall 1st – 2nd November.
If you are attending either event, please do come along and say hello to the team!