New Birdshot Uveitis Poster for Hospital Eye Clinics

BUS would like to support everyone who has been newly diagnosed with Birdshot.  We want them to know that BUS is here to see them through their Birdshot journey and to help them with useful information and practical advice.  BUS’s designer, David Bethell   has produced a clear, eye catching poster which should stand out well on the walls and display boards of eye clinics.

If you are prepared to be our postman to make sure that the poster gets displayed in your local eye clinic and ERG department, please let us know, and we can provide you with the poster for you to ensure it is displayed prominently in your clinic.  We know, from previous experience, that this is often a more effective way of getting the posters displayed.

You might like to ask your Optician or Doctors if they are also willing to display it. The poster’s size is A4 so it will not take up too much space on the clinics display area. You can help us to get Birdshot Uveitis better known by making sure that the poster can be seen!

Annie and Rea

Fight for OUR Sight – support the Carrots Nightwalk

On Friday 21st September 2012, Birdshotters and their friends are joining with Fight for Sight on the Carrots Night Walk.  Already, because  of the efforts of just a few of our group, friends and family,  over £2,000 has been raised.  Our target is  £12,000,  so we have quite a  way to go.  If you are able to take part in the walk, and help raise funds, please let us know as soon as possible.

If you are not able to take part in the walk, please support our efforts by donating to our team of walkers via the special team fund raising page at Just Giving.

Funds raised will go towards much needed research on Birdshot – hopefully we can find better treatments and maybe even a cure or prevention of Birdshot.  We would be grateful for any donation – even very small amounts make a huge difference.  We have 300 members, and if each of those were able to donate just £10 we would be able to find £3,000 for research.  This is OUR future and the future of the next generation – hopefully they will not have to suffer Birdshot!   So please turn out your pockets and make a small donation,  especially if you are not able to join us on the actual walk yourself.

Thank you in advance for any small amount you are able to donate, and a HUGE thank you to our members from the UK, Ireland, Canada, USA and Australia who have already donated to this cause – you are stars!

 

 

 

So please dig deep and donate now.

 

Experimental models of autoimmune inflammatory ocular diseases.

This recent review is from the Brazilian journal  Arq. Bras. Oftalmol. 2012 Apr; vol. 75(2) pp. 143-7  For those with a scientific/medical background, the whole of paper can be found at the following link.   http://www.scielo.br/scielo.php?pid=0004-2749&script=sci_issues

The review, written by medics, ophthalmologists and students, describes the main experimental models of autoimmune ocular inflammatory diseases.  The hope is that by better understanding the process of autoimmune ocular inflammation in animal models, it will lead to a better understanding of human ocular inflammation.

The paper concludes that the current and new models experimental models being developed may help us to develop new therapies with fewer side effects or new ways of delivering therapies.

Exciting news – there seems to be so much work going on around autoimmune posterior uveitis.  For those of you who want a fuller read, we reproduce the conclusion of the review below:

CONCLUSION

“Researches on experimental models have been important to explain the pathophysiological mechanisms involved in different ocular autoimmune inflammatory diseases. EAU is one of the most used animal models. After immunization with uveitogenic antigens, animals develop an immune response mediated primarily by CD4+ T cells. Clinical findings are somewhat similar to some human autoimmune uveitis. Even though these models contribute for a better understanding of the pathophysiology of autoimmune uveitis in humans, there are still many questions to be answered, such as triggers, recurrences, and individual susceptibility. Heterogeneous clinical findings may be related to the observation that each subject may respond to more than one epitope per antigen and respond differently to each one of them, depending on how it is presented and how it is recognized by the immune system.

Lately, new ocular inflammatory experimental models have been available due to the advances in genetics and molecular engineering. These models may help the development of news therapies, with more specific and efficient drugs, avoiding side effects. In addition, animal models are important for the study of new routes of drug delivery, especially by intravitreal injection.

 

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 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!

 

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

URL – http://www.ncbi.nlm.nih.gov/pubmed/22685876?dopt=Citation

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

URL – http://www.ncbi.nlm.nih.gov/pubmed/21958183?dopt=Citation

 

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

 

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.