Interleukin-5 – a better option than worms?

An interesting piece of research has just been reported on.  The research, undertaken by a team, led by Dr Suzanne Hodgkinson from the University of New South Wales in Australia has found that injecting interleukin-5 into rats with Guillain-Barre syndrome (an autoimmune disease) makes them recover much more quickly, and if given as a preventative measure, ensured they did not fall ill.  It seems that this treatment may also be effective in other autoimmune conditions (Birdshot is an autoimmune disease – perhaps it will work for us?).

The exciting thing about this kind of treatment is that it works by increasing the amount of ‘good’ cells.  Much of our current treatment relies on trying to suppress our ‘bad’ cells.

Even more interestingly, you may remember that we posted about a promising (although rather off-putting) treatment called helminthic therapy.  This therapy involves worms which change your immune response and helminthic therapy is currently being trialled on several different kinds of autoimmune diseases.  When you have an helminthic infestation, your immune system responds by increasing the production of eosinophils which make the cytokine interleukin-5.

Dr Suzanne Hodgkinson says ‘ In this new treatment, it’s a matter of injecting the interleukin-5 and the body does the rest.  It’s both safe and effective and we think inducing the immune response by injection may be more attractive to people than swallowing parasitic worms’.

We say, please hurry up and start trialling this on us Birdshotters!  Anything to avoid worms!!

Read the full article at

Birdshot – Getting the right Diagnosis

A paper, written by doctors from the Department of Ophthalmology at University Vita-Salute in Milan, has reminded us of how important it is to make sure that we have the correct diagnosis.  Just because we appear to have typical Birdshot lesions, and are HLA A29 positive, does not automatically mean we have Birdshot.  It is really important to rule out all other possible causes for our symptoms before Birdshot is diagnoses.

The Doctors highlight a case of a 43 year old woman who presented with bilateral (that means in both eyes) vitritis (inflammation of the vitreous body – one of the symptoms of Birdshot) and lesions that looked like the typical birdshot lesions. She tested positive for HLA A29 and was diagnosed with Birdshot.

However, she did not seem to respond to immunosuppressants, and there were some neurological symptoms she was experiencing.  Her diagnosis was re-evaluated, and she was diagnosed with intraocular lymphoma – a very different condition to Birdshot.

The doctors felt it important to write up this case to highlight the importance of careful follow up of patients with chronic uveitis and re-evaluation of systemic symptoms and signs.

Read More:



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:


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

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 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:


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:

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.

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.