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:



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?


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


More on Vitamin D

Those of you who attended the Birdshot Day on 3 March will remember our very inspiring speaker, Professor Glen Jeffery and his research into Vitamin D.

Coincidentally, John Hall, one of our Directors, was diving in Palau last week  and found a very extensive article on Vitamin D.  (for those of you who, like me, don’t know where Palau is – I looked it up – it is an island off the Philippines).

The full article can be found at


The article reviews all the research and all the arguments both for and against Vitamin D and looks at why it might be a useful remedy.

Please remember the warnings though – those of us who are on steroids and immunosuppressants are already putting some strain on our liver/kidneys, so please ALWAYS check with your consultant if you want to add supplements into your regime, as they can and do interact with your medication.


Bisphosphonates (Alendronic Acid) and possible side effects

We have written quite a few articles about bisphosphonates (we, with Birdshot are usually prescribed bisphosphonates, such as alendronic acid, when we are on steroids).  Bisphosphonates help to protect us against the damage to our bones that steroids may produce.

A recent study from British Columbia looked retrospectively at people who were first-time users of oral bisphosphonates and who had visited an ophthalmologist between 2000 and 2007.  This group was compared to people who did not use oral bisphosphonates.

The study concluded that the incidence of uveitis in first-time users of oral bisphosphonates was slightly higher than for non-users and the incidence of scleritis was quite a lot higher in first-time bisphosphonates users.

The findings were that people using oral bisphosphonates for the first time may be at higher risk of scleritis and uveitis than non-bisphosphonate users.

This is not really new information – we have known this for some time. It is important always to keep a check on our medications and side effects, and to have strong relationships with our consultants so we can fully understand the risks versus the benefits of each medication.

The full article can be found at


Lutein: The role it plays in eye health

Researchers from the University Eye Clinic in Maastricht, The Netherlands have looked at the role of Lutein in eye health.

Lutein is one of the carotenoids – it is a yellow and orange pigment found in many fruits and vegetables such as carrots, mangoes, corn, sweet potatoes, tomatoes and dark leafy greens such as kale and bok choy.  Interestingly, lutein tends to make up a minor part of our diets here in the UK.

It has been suggested for some time that Lutein protects the eyes against macular degeneration and cataracts.

Lutein, together with another anti-oxidant, zeaxanthin, forms the macular pigment (and thus protects us from glare and bright lights).

The research showed that animals that did not have an intake of lutein displayed early signs of degeneration of the retina.

Of equal interest to us Birdshotters is the recent findings that lutein can affect immune responses and reduce inflammation.

We are not suggesting that every Birdshotter rushes out to buy lutein – remember that every supplement can affect our body negatively as well as positively, and can inter-act with our medication regimes – so it is always best to check with your consultant.  However, this piece of research looks very promising, and is a really good reminder that we need a balanced, healthy diet.

The full article can be found at:  http://www.ncbi.nlm.nih.gov/pubmed/22465791

Micro organisms And Autoimmune Diseases

Scientists from Charite – Universitatsmedizin Berlin and the Institute for Research in Biomedicine in Switzerland have looked at the micro organisms we all carry around and found that, whilst some microorganisms can activate immune cells (leading to certain auto-immune diseases), other microorganisms can help develop an anti-inflammatory response.

They found that one of our body’s own immune system hormones called interleukin 1b works like a ‘switch’ – if it is present, it trains immune cells to become destructive (a dis-regulated immune system) whereas, if it is absent the immune cell develops into an anti-inflammatory counterpart.  It is the microorganism balance we carry in our bodies that determines whether interleukin 1b is produced or not.

This is really interesting – to my mind, it begins to explain why pro biotics have become so popular, and why something like food poisoning (which changes the balance of your micro organisms) might be a ‘trigger’ for autoimmune diseases.

The full article can be found in ScienceDaily at:  http://www.sciencedaily.com/releases/2012/04/120405075223.htm

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.

‘Clusters’ of Birdshotters? Your help please

With more Birdshotters registering on BUS, we are beginning to develop a better picture of Birdshot.  One of the interesting questions that keeps arising is whether certain geographical areas have more people with Birdshot.

At our Birdshot Day on 3 March, we were quite amazed to find two people with Birdshot from a very small town.  They were equally amazed!  We have also noticed that there are several members who live within a few miles of each other in an urban area and another ‘cluster’ in a northern city – again quite disproportionate to the probable total numbers of people with Birdshot in the UK.

We would really like to build up a more accurate picture of the geographical spread and we can only do this with your help.

We would love to have your postcode (if you have not already supplied us with it) so we can map where you live, and produce a more accurate map of the geographical location of us Birdshotters.  Your postcode will be kept totally confidential – it will only be used to help us identify your geographical location on a map.  Once we have mapped the UK, we will attempt to map other countries too, and begin to build up an international picture.

Please send your postcode to us at info@birdshot.org.uk

We thought you would be interested in seeing the google analytics map of the UK of visitors to the BUS website since September 2010. Of course, not all visits are from Birdshotters, but it certainly identifies areas where the strongest interest is.


Thank you in advance to everybody who sends us their postcode, so we can produce a realistic map of the UK to show geographical locations of people with Birdshot.  This will help to make sure research and services are targeted to meet our needs.