Uveitis – Quality of Life Research

A Group of ophthalmologists (including Nick Jones, who has been very helpful to BUS in the past) and optometrists from the Royal Eye Hospital in Manchester have undertaken a vision related quality of life and employment survey on working age patients with chronic uveitis who are taking immunosuppressants (most of us with Birdshot take immunosuppressants).

Their findings are that, those whose vision had deteriorated to the extent that they were not able to drive, were the ones who were more likely to have a poorer quality of life.

Their conclusion is that chronic uveitis, even when well controlled, can have substantial effects on a person’s social and psychological health, and can lead to difficulties at work.

This is confirmation of what we have heard from many of you and, interestingly, the survey also suggested that work can be put at risk because, for example, patients have to take so much time off work visiting NHS establishments for tests, appointments, monitoring, etc.

Find the write up on this survey at:


We have long argued that we need a more coherent approach to Birdshot and we need services built around us, rather than trying to fit in to an NHS that often requires us to spend several days a month in hospitals and other health establishments.

Please, please remember to complete our own Quality of Life survey, if you have not already done so.  This information will help us argue our case more strongly, and hopefully help us get more co-ordinated services.

Metformin – used for diabetes, but does it help uveitis?

Researchers from Texas University (Galveston Medical Branch) have discovered that Metformin, a drug used to treat diabetes, could help control inflammation in uveitis.

The researchers found that in laboratory rat and cell culture experiments, Metformin substantially reduced uveitis.

Even more excitingly, they found Metformin also prevented uveitis developing in rats. It seems that Metformin may have both preventive and therapeutic effects.  In short, Metformin inhibits the processes that cause inflammation.

This drug is already licensed and available for diabetes – it surely should not take too long for it to be trialed on uveitis?

Read the full article at:



Next SE/London Meeting – June 9th 2012 with exciting new research update!

The next meeting for Birdshot Friends in the London/SE area will be held on Saturday 9th June, from 10.30am – 1.00pm at St Thomas’s Hospital, Westminster Bridge Road, London SE1 7EH.

The meeting will take place in South Wing Lecture Theatre on the Ground Floor, near to the eye department. We might even go for lunch afterwards!

Joining us will be Professor Glen Jeffrey who has some new research to share with us and who is asking for our help – very exciting!!

There will also be some other guests on the day – watch this space!! – and plenty of opportunity to chat and catch up on all things Birdshot!

Everyone is welcome! If you are planning to come along please do e mail us at southeast@birdshot.org.uk

We look forward to seeing you there!

South East Team x

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.


Help Us Make Birdshot a Priority For Research!

We are re-posting this, as the survey ends on 31 July, and we need as many responses as we can get, in order to make sure that Birdshot becomes a priority for research.  If you have not already done so, please complete this survey.  It is quick and simple to do.  We have posted some ideas about what kind of research is needed into Birdshot at the end of this post, to help stimulate debate, and give you some ideas.  Remember that the more people who respond mentioning Birdshot, the more likely we are to get Birdshot as a priority!

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 www.sightlosspsp.org.uk 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!

1.  What causes Birdshot?

2.  Which part of the immune system becomes disregulated?

3.  How do you re-regulate the immune system without damaging the body?

4.  How can we find less toxic medication that does not adversely affect mental health and quality of life, but preserves vision?

5.  How can we ensure early detection of Birdshot to prevent sight loss?

6.  What are the genetic links and why are several generations of some families affected, and why does it seem to affect mainly Caucasians?

7.  Why is there a ‘spectrum’ of Birdshot?

8.  Why do different people respond differently to different medication regimes?

9.  Why is Birdshot treated systemically with toxic medications which adversely affect mental health and quality of life, when it seems to be confined to the eyes?

10.What does the link to HLA A29 mean in relation to treatment?

11.  What is the risk/benefit analysis of toxic treatment to prevent blindness versus blindness?

12.  What are the long term costs to health and social care of blindness which could have been prevented through the use of off license or off label medications?

13.  Is Birdshot best treated by ophthalmologists or should a clinical specialism of immunology be developed?

14.  Can holistic therapies such as acupuncture, meditation, hypnotherapy help in preventing or treating Birdshot?

15.  Can supplements, such as vitamin D or other therapies treat Birdshot less toxically than current medications?


Lorraine’s Birdshot Story

Lorraine is the BUS fund-raiser and was diagnosed with Birdshot in September 2011.  She was asked to tell her story to her local gym/club and they have published it on their web-site.  Wonderful – not only does it help us raise the profile, and hopefully get some donations in for the Carrot Walk, but it also means that Birdshot stories are now speeding around the world.  If anyone else can think of a way to get their stories into local or national media – please, please do.

Here is Lorraine

And here is the article Lorraine wrote for her local club:

I have been a member of the Park Club for over 5 years now and spend a huge amount of time in the adult bar and restaurant…I mean the gym!! The club has become such a big part of my family’s life over that period and never more so than now.

Last September I was diagnosed with an incurable eye disease called Birdshot Chorioretinopathy. This is a very rare and potentially blinding form of posterior uveitis which has a profound effect on your eyesight. It has changed my sight and my life in many ways over the last few months. I had pretty good vision up until June 2011 and then, within a few short months, I was unable to see well enough to cross the road safely on my own.

Birdshot is a very strange disease, it is quite mysterious and its progress and outcome vary enormously with every patient. It is often misdiagnosed and I feel really lucky that I live near an amazing hospital like Moorfields which has become my second home (after the Park Club!). The treatment for Birdshot is basically a lot of very toxic medication. I take more tablets now than I ever thought physically possible…I had to get over my tablet-taking phobia very quickly with this illness! I take very high doses of steroids and immunosuppressant drugs to control the inflammation in my eyes and to shut down my immune system. This, hopefully, will help to preserve my eyesight.

Since I started taking all these drugs I’ve seen some improvement in my vision and although I had a relapse in January I think I am making progress. This is something that unfortunately isn’t going to go away but will be part of my life forever. I’m trying to spend more time in the gym and doing classes because it’s really important to keep fit and strong when you are taking these kinds of drugs.

I’ve also become involved with The Birdshot Uveitis Society who have helped me a lot. In September I am taking part in the London Carrots Nightwalk for Fight For Sight. The aim of the walk is to raise money for a Birdshot Biobank to help fund research into this disease. I believe this is where the answers will lie. We need to find out why people get this eye condition and what can be done to treat it in a more effective way.

We are quite a rare group, us “Birdshotters” and our numbers are small. A Birdshot Biobank would really aid researchers and scientists interested in finding out more about the condition and would also help with devising better treatment options for sufferers.

Some fantastic friends from the Park Club are joining me on this walk and I think we will make a difference to the outcome for people like me. If you feel able to join us on our walk or to donate to this very personal cause, I would be so grateful! You can donate via my JustGiving page at http://www.justgiving.com/Lorraine-O-Mullane

Thanks for taking the time to read my essay!


Birdshot Day on You Tube

A short video of the Birdshot Day of 3 March 2012 has been posted on You Tube.  It gives an overview of the Day, and is only 4 minutes long, so makes easy viewing!  It is in HD, so really nice quality.  Take a look everybody, and if you like it, please like it!  And see if you can spot yourself, if you were there on the Day.

It can be found on Youtube by following the link below.


We are busy finalising the long DVD which will show the whole day, and this should be available in a couple of weeks.  We will let you know when it is ready.

Have fun viewing.


Government Rare Disease Plan – Consultation

Birdshot is a rare disease.  Because of this, it can sometimes be difficult to get the right diagnosis and treatment.

The Government will be implementing a Rare Disease Plan by 2013.  This plan SHOULD help all of us, with rare diseases get better services.  But will it?  The plan is now being consulted on, and the closing date for comments is 25th May.

This is our opportunity to give our opinions, and make sure the rare disease plan meets our needs.

You will remember that BUS has worked with Rare Disease UK  (the national alliance for people with rare diseases and all who support them) to help advise the government on what people with rare diseases need.  Some of our recommendations have been incorporated, but we are worried that this plan will not fully meet the needs of those of us with Birdshot and other rare diseases.

Individual patients can respond to the consultation, as can patient organisations and healthcare professionals.  If you are an individual patient, or a healthcare professional, please take the time to have a look at the rare disease plan, and see if you think it will work for you.  The plan can be found at:


If you want to understand why the proposed rare disease plan might not meet needs, Rare Disease UK have produced a very good presentation that you can listen to at:


If you have any concerns at all, following listening to the above presentation, please do submit your comments to the Department of Health.  If you need help in designing your comments, Rare Disease UK has provided help – just click on the link below.

advice document

Alternatively, you can submit your comments to Rea at info@birdshot.org.uk and she will collate and present them

Many thanks everybody – if we work together, we might be able to get an NHS system that meets our needs!

The role of Indocyanine Green Angiography in Birdshot Diagnosis

Carl Herbort and Marina Papadia from the Centre for Ophthalmic Specialised Care in Lausanne, Switzerland analysed the cases of Birdshot seen at the centre between 1995 and 2010.  These cases included people who had no specific diagnosis on referral, because they did not have the typical ‘birdshot lesions’, although they were HLA A29 positive.  These patients did have vitritis and retinal vasculitis (this is as a result of the inflammation, and to us Birdshotters presents as the floaters and ‘mist’ and other symptoms we have).

When these people were given ICG (Indocyanine Green Angiography) they were shown to have ‘bilateral evenly distributed choroidal hypofluorescent dark dots representing choroidal granulomas’.

The conclusion of this retrospective analysis is that ICG is an essential tool to diagnose early Birdshot.

This is a really interesting piece of research for me – I first presented without the typical Birdshot spots/lesions – but I was lucky to come across an amazing ophthalmologist who diagnosed me in record time (and did give me an ICG!) and got me onto appropriate medication in record time.  I still have very few of those characteristic spots/lesions, 7 years into the disease!

The full article can be accessed at:  http://www.ncbi.nlm.nih.gov/pubmed/22496001


How are patients involved in licensing new medications?

On 13 February 2012, Genetic Alliance UK published a report of a Citizens Jury’s findings.  The Citizens Jury was tasked with deciding on the balance of risk versus benefit of new medications for serious and rare diseases.  We are hoping that this report will influence the regulators for those of us with rare, serious diseases, who struggle to find appropriate medications.  The regulators often take a very cautious view about the risks of medications – however, many of us with serious conditions are prepared to take risks (as long as we are fully informed) if the benefits are that we can continue to live a good enough life.

This is something we, with Birdshot, already face.  We know that our medication regimes can be toxic, but we make the fully informed decision to take medication in order to preserve our sight.  That is our choice.

Rea was a member of the Citizens Jury – here she is with her fellow jurors.

More information on the Citizens Jury can be found at: http://www.geneticalliance.org.uk/latest-news.htm

Here are the findings of the Citizens Jury:

1. Regulators should include psychosocial factors in their decision making – Jurors would like to see regulators broadening the range of issues which they consider when deciding whether to approve a new medicine. Jurors have generated a list of 25 psychosocial factors that are important to them, to be included in the assessment of risks and benefits of new medicines.

2. Regulators should be more permissive for those treatments for people with rare and/or serious conditions-Because of their often unique circumstances, patients with rare and/or serious conditions may well be willing to take greater risks than the system currently allows. They should be given that choice.

3.  Patients should be more involved in all stages of the process, from setting the research agenda, to post-marketing authorisation decisions – Patients’ experiences and preferences should be included at all stages. Patient representatives (such as patient group members) should be supported to be joint decision makers, alongside clinical experts, throughout the process.

4. Patients should be better supported to make their own decisions – Decision-making about new medicines is challenging, but possible for most patients provided they are given adequate information and support? (or something like that). Jurors generated a list of questions to help guide patients when deciding on their own treatment options.