Article about Birdshot in Optometry Today

Below is a link to an article which appeared in the April 2011 edition of Optometry Today. ” Birdshot Case Study“.    It was written for us by Emily Kirkby, a student who was involved in the Birdshot Day in September 2010, with help from Rea, her consultant Nigel Hall, Narciss Okhravi and other members of the Birdshot team.

As  most of us with a Birdshot diagnosis know, Birdshot Chorioretinopathy is difficult to diagnose, particularly in the early stages before the tell tale lesions appear.  A  case study like this that appears in a widely read optometry magazine should help to make optometrists more aware about this rare autoimmune eye condition.  Opticians are the people we often first turn to when we have eye problems.  With Birdshot, it is really important to get speedy treatment and if the optometrist or optician is informed about it, we stand a chance of this happening.

Please let your optometrist know about this article – help spread the word.

How can we get hold of new medicines?

Many of us with Birdshot will have experienced the difficulties of getting hold of medication that controls our Birdshot, if we don’t respond to the ‘usual’ medication regime of steroids and mycophenolate mofetil.  For many of us, we have had to get our consultants and GPs to apply to the relevant health agency (usually the Primary Care Trust that covers our area) for a ‘special circumstances hearing’.  Often, this takes months, only to be told, at the end of the process, that the PCT will not approve the medication regime we have applied for.

Well, help is at hand!  Not only is a ‘rare disease strategy’ being implemented across the UK in 2013, but also, the Genetic Alliance UK is currently looking at how we, with rare diseases, should get access to medications (none of which have been specifically licensed for our disease) and who should decide whether they are safe or not.

You can help.

The Genetic Alliance UK is now launching a recruitment campaign for an innovative and exciting research project about new medicines.

They want your views and your participation – It’s all about getting your views heard.  Below, we include a few more details about the project and how you can get involved.

Anyone interested in participating should visit the Genetic Alliance website for full information but here is a short summary:

New medicines: How should we weigh the risks and benefits? And who should do so?

Genetic Alliance are looking for people who are affected by a severe, rare or genetic condition, to take part in a Citizens’ Jury later this year. They are looking for up to 16 individuals to form a diverse jury that will deliberate a very important issue – the risks and benefits of new medicines. Not only will jurors get their voice heard in an innovative and high profile way, but they will be paid for their time too!

There is further information available about the project and how people can get involved on the Genetic Alliance UK website, including a short explanatory video clip and an online questionnaire for people to register their interest.

The aim is to generate as much awareness and interest in the project as possible! To  find out more please contact Project Officer, Amy Simpson ( or Marketing Officer, Julian Walker (


Rea and Annie




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Good outcome from steroid implants

An American study was published earlier this year, looking at the outcomes for Birdshot patients who had been on steroid implants (the longer name for these steroid implants is corticosteroid intraocular devices). 22 Birdshot patients were involved in the study which looked retrospectively (over a 3 year period) at the outcomes.

The outcomes were extremely positive, and showed that the steroid implants had significantly improved vision, controlled inflammation and in the majority of cases stopped the need for other medications. As always, there are some down sides – in the case of steroid implants the main side effects were a high incidence of the progression of cataracts and a high incidence of intraocular pressure (called glaucoma).

If you want to read the full study, go to the American Journal of Ophthalmology.

We at BUS, are really excited that there seems to be a growing number of suitable alternatives for people who are not responding well to oral steroids and various different types of immunosuppressants, or who cannot tolerate these medication regimes.

The importance of a published study is that it provides evidence for patients and consultants who might be struggling to acquire steroid implants from their primary care trusts or health organisation, or who are looking for alternatives to oral steroids and immunosuppression.

For those of you who attended the Birdshot Day in September 2010, you will remember that steroid implants were discussed at some length on the Day. There was one attendee who had these implants and was extremely passionate about them.

If you want to hear more about steroid implants for the Birdshot Day, please go to our clip on retisert implants at:

Since the Birdshot Day, we have heard from one attendee who says that the Day changes her life and equipped her with enough information to be confident in moving to steroid implants. She reports that she can now see clearly for the first time for many years without the aid of immunosuppressive treatment. We also know of another person who has been offered them on a special trial and a third person who is discussing this option with their specialist.

We are so pleased at the more rapid progress of alternative treatments and we are delighted that the Birdshot Day has equipped attendees with the means to work in partnership with their consultants to explore all possible options. We are even more delighted to see that so many more consultants are now listening to their patients and there is a two way dialogue and a real exploration of all options available. Let’s hope that we can also make some headway in finding out the reason we get Birdshot in the first place!

Bringing Together Patients and Specialists

This is the abstract for the poster that trainee ophthalmologist Nik Koutroumanos presented at the London, Kent, Surrey and Sussex Deanery Trainees conference last week.  It describes what happened at the Birdshot Day  and it caused quite a lot of interest there among the young doctors  who will have gone away from the conference much more aware about our particular rare condition.  There is great  value in educating future ophthalmologists, who are not yet commited to a subspecialty area of uveitis and who will be carrying the knowledge of Birdshot to the corneal, vitreoretinal and paediatric eye clinics that they will inevitably become involved in. Thanks Nik for helping to spread the word.

Purpose: Birdshot Chorioretinopathy (BCR) is a rare, chronic, poorly understood, bilateral posterior uveitis, which results in loss of visual function. The disease and its treatment have dire effects on quality of life. The aims of the project were 5 fold: 1) To reduce the sense of isolation of patients with BCR, 2) to raise the profile of the disease 3) to allow a two-way exchange of information between patients and professionals, 4) to obtain a better visual outcome and 5) to provide a base for research.

Methods: A Birdshot Day was organized by founders of the Birdshot Uveitis Society along with a team of healthcare professionals, public-engagement and audio-visual specialists. What patients wanted was the focus of the team’s efforts. The event allowed for extensive networking and exchange of ideas, talks by specialists and patient representatives and ‘Question & Answer’ sessions which addressed patients’ concerns. Structured anonymised questionnaires and formal interactive evaluation techniques were used to fully evaluate the success and short and long term impact of the day on both patients and professionals.

Results: 50 Patients & 26 supporters joined 50 healthcare professionals for the Patient Day. Data analysis demonstrated a significant improvement in patient knowledge (P<0.001). Results showed that the priorities of patients and clinicians were not necessarily the same. Whilst drug side-effects were deemed the major problem in terms of patients’ quality of life (55.8%), BCR patients prioritised research into aetiology (47.8%) in preference to research into better medication (31.8%). There was evidence that patients greatly valued meeting fellow sufferers (P<0.001). Results strongly suggested that patients’ sense of isolation was significantly reduced and the number of ‘hits’ on the BUS website in the 3-weeks following more than doubled to 67,000. To date, 4 of our 5 aims have been achieved.

Conclusions: We believe that this level of patient engagement should be encouraged. The Birdshot Patient Day proved a success. It has led to better understanding between patients and professionals. Patients have successfully directed and engaged into future research into their condition and future Birdshot Patient days are planned.

After the conference , Nik told us that  he found that many trainees  at the conference were  greatly interested in the concept of a patient day for a rare condition and he  also thought that it was most valuable to  be able talk to trainee ophthalmologists about the significance of involving patients  in research.

We look forward to results.

Our very first study!

For those of you who attended the Birdshot Day in September 2010, you will remember that one of the aims was to set up a research network. We are very excited that research has now started at Moorfields Eye Hospital, and at least two of our members are already involved in one of these studies.

The study involves the trialling of a Motion Detection Perception test.

This test will assess your ability to see a moving target on a computer screen, so it is painless and quick and easy to do. Designed by the Institute of Ophthalmology and Moorfields Eye Hospital, it has already successfully been used for detecting early stage glaucoma and the researchers want to see if this test may be equally useful for people with Birdshot.


Real Ale reported he had a long and detailed interview with a researcher and was feeling more optimistic because of the care and trouble being taken. They even arranged for his cataract to be removed because it was going to aid their ability to monitor his birdshot. David reports having a similarly detailed interview with a different researcher.

Both were really impressed with the real interest shown by the researchers. We are really excited by the spin off benefits of these research projects – the raising of the profile of Birdshot, the interest being engendered in researchers and the more focussed care that patients receive as a result.

We are so grateful to ‘Team Birdshot’ – all the consultants, specialists, patients, family members and BUS who set up the Birdshot Day and enabled research to start. We will keep you informed as the research network progresses, and most importantly, we will be letting you know of any opportunities to become involved in research. The current research project is using patients already attending Moorfields, however future research projects will include a much wider range of patients from around the country.

Birdshot gets a mention on french TV

Sylvain Mignon has set up a Birdshot Foundation in France.  He is raising money for Birdshot research in Paris.      He told us about this television news item from yesterday’s news round up, which if you speak french  or are interesed, you can view  here.  It is about  three and half minutes into the video clip.—champagne-info-2011-02-17-18h50.html

Premier reportage télévisé sur la maladie de Birdshot et sur HORUS BIRDSHOT – le rportage démarre apres 3mn30 d’émission et dure 2mn, merci de vos commentaires.

For English people : first program about the birdshot disease on french TV and specialy on the Horus Birdshot society , in french of course – thanks for any comments.

JT Local 19/20 – Champagne Info

Toutes les informations de votre région.

Research Network

Rea and Annie, met with the consultants who we are working with to discuss our future research network and the projects that they  will undertake.

This is a slow process but we are working hard to get this off the ground.

Below is a picture of us on Monday, when we met.  (left to right: Mark Westcott, Miles Stanford, Narciss Okhravi, Rea  Mattocks and Annie Folkard.) More about the projects we are trying to get off the ground later….