Help change your future!

We are posting this again and hope that if you have not already completed this short survey you can find the time to do it.  Your help with this survey could help change future treatment for  all Birdshotters!


Rea and Annie

The Sight Loss and Vision Survey is a joint initiative between Fight for Sight, The Royal College of Ophthalmologists, The College of Optometrists, the National Institute of Health Research, RNIB and The James Lind Alliance. It has been set up to find those areas of research that have not yet been identified. For us with Birdshot, this is really important, as we have a rare disease, and very little research has been carried out to date. This is our opportunity to get Birdshot (and other rare, auto-immune forms of posterior uveitis) on the national agenda. Because the survey will be completed by patients, it will have great credibility and it is hoped that funds can then be identified for some of the research needs.

The James Lind Alliance is a non-profit making organisation, funded by the National Institute for Health Research, which will oversee this initiative ensuring the exercise produces an unbiased result, with equal weighting being given to each of the participating groups – so your opinion really will count.

The Sight Loss and Vision Survey will allow you to identify your most pressing questions about the prevention, diagnosis and treatment of Birdshot.

The more Birdshotters that complete the survey the more likely we are to be able to influence the research agenda and receive valuable funding from the government for research into Birdshot – we really do need you to take part.

To complete the survey and learn more about this initiative please visit where you will find both the online survey and can request alternative formats – post/fax or telephone.

The survey takes less than 10 minutes to complete so please take this opportunity to represent Birdshot and help change the future of eye research.

Thank you!


Uveitis and stress

Many of us believe that stress may be a contributory factor in our Birdshot and in flare-ups.  Stress has been linked to auto-immune diseases and it is commonly thought that there is a stress relationship with flare-ups in other forms of Uveitis.

A paper by R Khanfer , G Wallace, P A Keane, and A C Phillips has reviewed what is currently known about the relationship between uveitis and psychological stress.

Birdshot Uveitis Society knows two of the authors well.  Dr Graham Wallace was one of the speakers at our last Birdshot Day,  and Pearse Keane, whilst unable to attend the Day, has been a key professional working in the field of Birdshot, and will be attending our next Day.   Pearse was introduced to us by BUS member Nick Bucknall and consultant Alastair Denniston.  Both Pearse and Alastair are very interested in  OCT imaging in relation to Birdshot Uveitis and have been working on research in this field as well.

Here is an abstract from the paper:

“Uveitis is an inflammatory condition affecting the eye and is often associated with systemic autoimmune disease. A role for the involvement of psychological stress in autoimmune disease has been widely demonstrated. However, uveitis is not classified as an autoimmune disease, and a definite or direct cause has yet to be identified, although infection may be involved. Many uveitis patients retrospectively report stressful life events occurring prior to the onset or recurrence of uveitis. However, only a small number of studies have explored the potential association between psychological stress and uveitis, and their findings are somewhat contradictory, many showing that the experience of uveitis itself results in stress. ”

It is really interesting to see this piece of research, and our own quality of life survey should help to begin to answer some of the questions:  Is it stress that helps trigger Birdshot (or the severity of Birdshot) or Birdshot that triggers stress or medication that leads to stress and causes flare ups?

Read the full article at the link below.

PMID: 22685876


Testing and Monitoring for Birdshot

We have recently posted about the importance of ensuring that we get the right diagnosis, testing and monitoring for Birdshot as other diseases can often look like Birdshot, but will require totally different treatments.  A research paper from the Massachusetts Eye and Ear infirmary in Boston has recently been published, and builds on this theme.

The paper examines ways in which to test and monitor for Birdshot, and is really useful in helping us understand the monitoring tests we get, and why we get them.

In short, the paper explains that it is critical to diagnose and carefully monitor Birdshot as it can progress insidiuously without any associated pain, and looking just for visual acuity, inflammation or vascular leakage of fluorescein alone, may not be effective.

The authors of the paper review the current methods of diagnosing, testing and monitoring for Birdshot including ERGs, fluorescine angiography, indocyanine green angiography, OCTs, visual field tests and HLA A29 blood testing.

The major finding is that 70% of people with Birdshot have abnormal readings on one of the parameters (the 30 hz flicker) of ERGs.  This is really interesting, as it means that ERGs may be a fairly good way to help diagnose Birdshot.  It also could mean that if we have a ‘normal’ 30 hz flicker result, we may be able to reduce our medication.

This does not mean, of course, that we can do without some of the other monitoring – each system has its uses.  For example, OCT is particularly pertinent if you have macular oedema, and we posted recently about the importance of indocyanine green angiography.  However, it does help us, as patients with Birdshot, understand why all these tests are so very important in ensuring that we maintain our visual acuity and are not under or over medicated, and that our medication regimes are effective.

Read the full article by clicking the link below.

AUTHORS: Comander J, Loewenstein J, Sobrin L

PMID: 21958183



Birdshot or Not?

We recently posted a news item about the importance of being sure that the diagnosis of Birdshot is the correct one.  This is because each different eye condition requires different treatment.  For those of us with Birdshot, we really need early and accurate diagnosis and speedy treatment designed for Birdshot (and not for some other uveitic eye condition).

There are several eye conditions that produce the ‘typical’ cream coloured lesions that are so characteristic of Birdshot.  We have just come across another case which clearly demonstrates why it is so important to not immediately diagnose people with Birdshot if they present with these cream coloured lesions.

This case involves a 9 year old girl who presented at the department of ophthalmology in Samsun, Turkey.  On examination, she had numerous oval, irregular cream coloured choroidal lesions which resembled Birdshot lesions.  However, these doctors went on to test further and diagnosed this girl with sarcoidosis.  They wrote the case up to demonstrate how important it is to think of all the possible diagnoses, when seeing ‘birdshot type’ lesions.

The lesson is that not all ‘characteristic Birdshot lesions’ mean that you have Birdshot!  This case illustrates really well why proper diagnosis is so important.

Read the full article at:






Launching the Human Ocular Immunology Consortium

On Tuesday 22 May, Rea and Annie were privileged to be invited to the launch of the Human Ocular Immunology Consortium.  This Consortium is a partnership between the National Eye Institute (NEI) in the United States and the NIHR Biomedical Research Centre in the UK.  Researchers from London, Bristol and Washington will be developing joint research programmes in the field of Ocular Immunology.  This is really exciting, as it gives us a much wider group of experts who can look into the causes of, and better medication for Birdshot.  It also opens up the possibility of having an international biobank for Birdshot and other posterior, auto-immune forms of uveitis.

The launch was introduced by Professor Peng Khaw  (Director of Research and Development, Moorfields Eye Hospital NHS Foundation Trust and Director of NIHR Moorfields Biomedical Research Centre and President of ARVO – the Association for Research in Vision and Ophthalmology).  For those of you who attended the Birdshot Day in March of this year, you may remember that one of our US members, Doris Lapporte, asked why there could not be an agreement for Birdshot research across the UK and the US, as US Birdshotters were missing out.  Peng Khaw referred to this in his opening remarks – he then went on to say that we had been listened to!   Well done Doris!!  Peng has always been a strong supporter of the Birdshot Uveitis Society and the Birdshot Days and he kindly provided the narrative on our 2010 Birdshot Day short film.

We are so excited by this development, especially as it demonstrates how influential we can be when we Birdshotters work together.


Announcing Birdshot Day 2012 DVD

Birdshot Day March 2012

Hot News!  The 2012 Birdshot Day DVDs are now available.  They contain all the talks, all the question and answer sessions and individual interviews with patients and professionals.  Compulsive viewing for those of you who were not able to attend the day, and for those of you who want to relive the day.

We are trying to provide the DVD free of charge, but we do need a donation to cover the cost of production, postage and packing.   To order your copy, please email us at giving us details of where you want it posted.

Donations for the DVD can be made online through our web page on the B My Charity button:

Donate button

or if you are overseas, via Paypal on our website:

(yellow button below)

Thank you.

The talks and interviews (but not the hour long question and answer session)  are also available online on You Tube at Birdshot100


2nd Birdshot Day, 2012 on You Tube

We have now posted  all of the talks from the 2nd Birdshot Day held on 3 March 2012.  To access these, please go to You Tube and type in Birdshot Uveitis Society to find our channel.

Alternatively, click on the links below.

Birdshot Day Speakers

Mike Brace, CBE – The importance of the Birdshot Day

Miss Narciss Okhravi – Introduction to the Birdshot Day

Professor Andrew Dick – Patient, Clinician and Researcher Partnerships

Rea Mattocks – Introduction to BUS

Dr Graham Wallace – The Science of Birdshot

Mr Nigel Hall – Diagnosing, Testing and Monitoring

Professor Miles Stanford – Medication Options

Morning Question and Answer Session

Miss Dhanes Thomas – Introduction to Biobanks

Professor Phil Murray – The National Birdshot Research Network

Lorraine O’Mullane – Appeal for funding Birdshot Research

Julian Jackson – Fight for Sight and funding Birdshot research

Professor Will Ayliffe – Quality of Life Survey for Birdshot

Simon Denegri – Patient involvement in research (INVOLVE)

Mr Carlos Pavesio – Current research into Birdshot

Mr Alastair Denniston – Outcomes of research

Professor Glen Jeffrey – Vitamin D and Inflammatory Diseases


Kathy Evans Royal College of Ophthalmologists – Talking about BUS

Niss Narciss Okhravi – The National Birdshot Research Network

Annie – Stable Birdshot

Ann – A family with Birdshot

Liam – A family with Birdshot

Helen – Birdshot in Israel

Sandra – Birdshot Effects

Colin – Birdshot Effects

Nick B – In Remission from Birdshot

Nick Collins – Living with low vision

Happy viewing everyone.


Food Poisoning and autoimmune diseases

Many research studies have looked at the link between food poisoning and the onset of diseases, either shortly after the food poisoning, or later in life.

Last week, the Daily Mail published a short article by Fiona MacRae, the Science Correspondent, reminding us of this link. The article states that Salmonella, E Coli and other types of food poisoning may have lifelong consequence.  This includes the possibility of autoimmune diseases. The full article can be accessed at:

This article got us thinking. We know of at least two people who had very very severe food poisoning shortly before the first Birdshot symptoms occurred (one of these people is Rea).

Can anyone else identify this as a trigger to Birdshot? Or can you think of any other possible trigger? It would be really helpful to start collating this information, so we can begin to identify whether there are common ‘triggers’ or a whole range of triggers.

Humberside Local Birdshotter Group and Fundraising

Sue Bridge, a BUS member and a Birdshotter, is setting up a local group for people with Birdshot in the Humberside/Lincolnshire area. She had already set a date for the first meeting, but this had to be cancelled due to bad weather. She is now busy re-organising this first meeting.

Last weekend she and another Birdshotter set up a BUS stall at a local craft fair to advertise Birdshot and to raise money by selling hand made cards and crafts.

Below is a photograph of their stall – it really looks great. This is wonderful publicity for us – any opportunity we can get to help raise the profile of this rare disease helps us along the path of creating more interest and finding better treatments or a cure.

Many thanks Sue for your hard work. Any Birdshotters in the Lincolnshire, Humberside, Yorkshire wanting to attend the local group can email She is really keen to hear from you.


Sue Bridge sells cards at local craft fair

Sue Bridge sells her hand-made cards at a local craft fair for BUS




Birdshot Day 2012 Feedback

Team Birdshot

Above the team of helpers: member of BUS and family and friends, medical students, staff from Moorfields Eye Hospital and the NIHR BRC for Ophthalmology.  Thank you all of you.  We wouldn’t have been successful without all your help.

Below views of the audience (at times the auditorium was completely full) with nearly 200 patients and professional attending.


Follow the  links below if you want to see small galleries of  pictures from the day which were all taken by Meike Walcha, NIHR BRC for Ophthalmology at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology.


Birdshot Day 2012

Setting up and Registration

Speakers and people involved in the day

Mingling and mixing

Poster Evaluation

Exhibitors on the Day

Art Workshop