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: http://journals.lww.com/retinalcases/Abstract/2012/00610/Sarcoid_Uveitis_Simulating_Birdshot.3.aspx

 

 

 

 

 

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 info@birdshot.org.uk 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

 

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: http://informahealthcare.com/doi/abs/10.3109/09273948.2012.689074

 

 

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:

http://www.ncbi.nlm.nih.gov/pubmed/22568885?dopt=Citation

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:

http://www.medicalnewstoday.com/releases/245125.php

 

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

Interviews:-

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!

Lorraine