Fight for Sight and AZOOR Society Community Day

23 March 18

written by:

Natalie Aspinall

(more articles)

Fight for Sight and the AZOOR Society teamed up this week [19-3-18] to hold the first ever community day dedicated to the condition. AZOOR (Acute Zonal Occult Outer Retinopathy) is a rare eye condition which can result in complete sight loss. It was only recognised and named just over 25 years ago – in a paper describing the condition published in 1992 – and there is currently no treatment to reverse the sight loss resulting from it.

The AZOOR Society was set up in 2002 by Rita Upchurch, after her daughter Liz was diagnosed with the condition in her early 20s. Liz, a successful composer and musician who now lives in Canada, shared some of her experiences via a video message. She described what happened to her before her diagnosis as “quite scary”, with the first symptoms being flashing lights, photophobia and lines across her vision. Her journey towards a diagnosis was not straightforward – and still isn’t for many patients today – but she has the distinction of being the first person diagnosed with the condition at London’s Moorfields Eye Hospital.

Professor Andrew Webster, a researcher at UCL Institute of Ophthalmology, talked about what is known of the condition, noting that the “root cause” has not yet been established. There are questions that researchers are currently trying to answer - is it linked to auto-immune retinopathy or caused by certain types of inflammation - but we are currently some way from finding those answers. He also outlined how the condition presents, noting that the “acute” part of the name means that it can come on very quickly. The “occult” refers to the fact that it can seem “hidden”, as the retina can seem normal when using the standard optical tests, including white light photography.

Professor Jonathan Virgo spoke about his time at Moorfields where he completed an academic series following patients with AZOOR. He discussed the different specialist investigations that are used for diagnosis and monitoring. The current treatment options were also discussed, including the use of steroids as the first line of treatment, especially in the early stages of the condition. Treatment is most suitable for patients with progressive disease.

Fight for Sight’s CEO, Michele Acton, took to the floor to make the case for research – why it needs to be supported and the huge positive impact it can have. One of her key points was the difficulty in getting early stage research funded, particularly for a rare condition. This is where charities supporting medical research have a vital role to play as they won’t be focusing on a financial return, but rather a social return and the potential benefits to the patient population.

Michele signed off by taking the opportunity to announce that a joint AZOOR Society and Fight for Sight small grant will be open for applications in the summer. This will be awarded to support research specifically aimed at addressing AZOOR.

Finally, Anita Hurton, a friend of Fight for Sight and fantastic fundraiser, shared her experiences of living with AZOOR. She spoke of not having any noticeable sight loss at the start – there was flashing and some lines across her vision and, initially, a diagnosis of retinitis pigmentosa. Her condition was stable for 10 years and life proceeded pretty much as normal. Anita did pause to note that when it was confirmed that the diagnosis of retinitis pigmentosa was incorrect she was very relieved as, with two young children, it meant that she didn’t have to worry about passing the condition to them. After ten years or so, with the results of a sight test that showed her field of vision had deteriorated, she did lose her driving licence. Then a period of 8 more years of stability which ended when, overnight, she had an almost complete loss of vision. Anita is now registered blind, with no vision in her left eye and just a window of central vision in the right. She said: “To live your life not seeing is a big worry”. But Anita’s story includes the achievement of completing a half marathon weeks after she lost her sight - and in an impressive 2 hours and 1 minute!

Fight for Sight and the AZOOR Society have established a very positive partnership, which will do much to support patients with AZOOR, both in terms of the peer support and information available and in working to understand the condition and develop new treatments. Many thanks to Rita and all those who working hard at the AZOOR Society to raise awareness of the condition and for pulling together the first ever community day.