People with Birdshot talk….(2010)

It’s a frustrating fact that diagnosis for Birdshot is not easy, even for the experts. That’s why it takes so many of us a long time before we eventually get told what is wrong with our eyes, and even then, sometimes we get told later on, that actually after all it’s not Birdshot, but something else which more than likely needs equally aggressive treatment. Dagmar of Birdshot Lefora website reminds us that we need to remember that:-

“There is NO single test/indicator/marker for birdshot, although everyone seems to think the HLA A29 positive is. It is not. Just one of many areas a good diagnostician will ponder. We all want an answer and the reality is, for some, there is not a definite yes or no as to their diagnosis.

Uveitis = inflammation of the uvea, something has caused that inflammation. Therefore, having uveitis indicates there is something else wrong; there are about 60 or so conditions that are identified as causing uveitis, and for a quite few, the diagnosis is ideopathic or cause unknown. Our ophthalmologists are just like a lawyer who is building a case, bit by bit, with each piece of evidence to draw a conclusion.”

Here are 3 short interviews  people with birdshot who attended the Birdshot Day back in September 2010.

Mrs Birdshot has had Birdshot for over thirty years. It took a long while for her to be diagnosed and over the years has received a number of different treatments, some more successful than others. Her’s is a positive story. She has maintained her vision and she doesn’t regard herself as ill and doesn’t want to be thought of as a patient. She wants to have a partnership approach to her treatment with her doctor.

Carole’s story is similar to Annie’s. She has been treated for a number of years and has maintained reasonable vision.

Lesley is a young woman who has been treated for her Birdshot for over 10 years. She’s had a tough time finding the right treatment for her Birdshot and her arthritis, but her current medication is controlling both and she couldn’t be happier.


Happy Christmas 2010

BUS Christmas Robin Box Web Card-1

Dear Members and Friends and Supporters,

We would like to thank you for having helped BUS grow and develop. We don’t think there is any ophthalmologist in the UK who does not know about Birdshot now! We could not have done this without your help and support. 2011 is going to be a great year for us – if we get the research moving quickly, we could be looking at better, more effective medication regimes for us – and maybe even prevention of Birdshot for future generations!

We need your continued support – please let us know if you would like to get more involved in 2011, and let us know what your priorities are for 2011.

Merry Christmas and a very happy, healthy and prosperous New Year to all our members, friends and fans

Rea and Annie

PS an especially big thank you to David our graphic designer who came up with this unique and striking interpretation of the Christmas robin for our very first Christmas card.   We didn’t even have to ask!   Thanks David you’re a star.



New research into how we see

Our eyes see the world in previously unsuspected ways, say scientists

A type of nerve cell in the retina of the eye may have a more sophisticated role in vision than we thought, a finding that may lead to treatments for some kinds of blindness

To read more about this follow the link to the article in the The Guardian Newspaper 7th December 2010.  A scientific breath through in the understanding of how light sensitive proteins (melanopsins) relay visual information of the brain could lead to new treatments for blindness caused by degradation of rods and cones inside the eye.

Rare Diseases UK News

Many people with a  Birdshot diagnosis  will be familiar with  some of the problems highlighted below.  We believe that BUS and its members  can make a difference and help get better treatment for our particular rare disease.  But it is only by working together.

Below is Rare Disease UK’s latest newsletter and link to a  recent report about rare diseases which may be of interest to you. Continue reading

NIHR & UCL Institute of Ophthalmology

We previously told you that we had been invited by Moorfields to attend the symposium of the NIHR Specialist Biomedical Research Centre for Ophthalmology at Moorfields Eye Hospital and UCL Institute of Ophthalmology. Here is a brief report. We had the chance to meet many leading people involved in eye research, clinical ophthalmology and wider health research, including those pictured below. We were introduced to Professor Dame Sally Davies by Professor Khaw and discussed patient participation in research. It is good to know that the current Chief Medical Officer is now very aware of the BUS /Moorfields activities.

Donating Eyes

We talked to Professor Luthert about the possibilities of people with Birdshot donating their eyes in the future for research.   Here Narciss Okhravi answers the question posed by one of the delegates at the Birdshot Day, who wanted to know what she should do if she wanted her eyes to be donated to research after she has died. BUS is now following this up to find out how to enable this. Continue reading

Give via your on-line Christmas shopping

Thinking about doing your Christmas shopping online? You might like to use the Easyfundraising site to do this. This is an excellent, easy, on-line way to help raise money for future  research and Birdshot days, while you do your normal on-line Christmas shopping and it doesn’t cost you anything. Retailers such as Amazon, Next, Argos, John Lewis, Comet, iTunes, eBay, M&S  and HMV, all give money when you shop-online via Easy-Fundraising. You shop directly with the retailer as you would normally do, but if you sign up to for free and use the links on the easyfundraising site to take you to the retailer before you shop, then a percentage of whatever you spend comes directly to us at no extra cost to yourself. This service is FREE to use and will give you access to hundreds of exclusive discounts and voucher codes, so not only will you be helping us while you buy your Christmas presents, you will also help to save money yourself.


Please support the petition!

eurodis-80h We are members of EURODIS via the Uveitis information Group. We would like to ask our members to consider signing an appeal in support of the Telethon. Over 1,800 people have already signed and it is of utmost importance to reach 5,000 signatures!

The Telethon is organised by the AFM, the French Muscular Dystrophy Association. Although the Telethon is run in their name it raises over 100 million euros for research and services to aid the lives of people living with Rare Diseases generally.

Certain groups have for some time declared that the French Telethon supports only one disease area, this is not true. The AFM Telethon contributes yearly to the French Rare Disease Alliance, EURORDIS and Orphanet, it supports vital services and funds medical research programmes covering many rare diseases. In fact a number of European researchers work in collaboration with those funded through the Telethon, so any threat to this event will impact on the development of rare disease research right across the continent and beyond.

Thanks to the AFM Telethon:

  • 2,700 genes identified
  • 34 clinical trials ongoing

With this in mind, we ask you to sign our appeal at

Cellcept – goes generic

Instead of the usual purple white and black pack, that I pick up every month from my friendly local chemist I was greeted today by a white,orange and lurid green one.  Its called Myfenax, and apparently the ingredients are identical to Cellcept.  Jay, my pharmacist had told me when when I dropped off my prescription, that cellcept had gone generic and that the problem of obtaining it would now be over; but I hadn’t realised quite how quickly.  Myfenax is produced by Teva Pharma who are a dutch company, but inside the “mixed” pack I also had drugs from Dr Reddy’s Laboratories…… and  they are  an indian company based in Hyderabad, although they have a UK subsidiary marketing the drugs here. Continue reading

LONDON Marathon 2011 – We need your donations


We are really excited to tell you that Ken Fitzmaurice, a qualified Pilates instructor, is running in the 2011 marathon to raise funds for Uveitis research. Please dig deep and donate to this cause – it should help us find more targeted and less toxic medication. To donate, just go to:

Ken wanted to run for BUS (Birdshot Chorioretinopathy Uveitis Society), but because we are so small (just Annie and Rea) and we have concentrated on working to support people with Birdshot and raising the profile of the disease, rather than raising funds, we do not have the money to pay the very large entrance fee for marathon runners.

So, in a unique and first ever partnership, Fight For Sight has entered Ken into the London Marathon under their membership, on our behalf. Fight For Sight is a large charity that raises money for research, and we have been working with them for some time now. The money raised by Ken will be going towards research being undertaken by Dr John Curnow and Professor Phil Murray. Below is a description of the research project, which we are hoping will lead to less toxic medication for all of us. You may know that Professor Murray is one of the several prominent ophthalmologists that works with us through our Mother charity, UIG (Uveitis Information Group), and has been enormously helpful to BUS too. We are so pleased to be able to raise money for this project, so please dig deep – you never know – this might just be the research that helps us get a better quality of life.

Description of research: Ocular regulatory T cells in Uveitis: Uveitis is the 5th commonest cause of visual loss in the developed world and is characterised by a large increase in the number of white blood cells (T cells) entering the inflamed eye. Some of these cells are aggressive (effector T cells) and cause damage to the eye. However another group of cells are designed to switch off the aggressive cells, and are termed regulatory cells (regulatory T cells). The role of these regulatory cells in uveitis is not well understood.

This project aims to determine if the regulatory cells and aggressive cells use different mechanisms to be recruited to the eye in inflammation. In addition it is possible that the inflamed eye may prevent the regulatory cells from functioning properly. The data generated will further our understanding of how regulatory cells control inflammation in uveitis. In addition it is hoped to identify new therapeutic targets that will either prevent recruitment of pathogenic cells while still allowing regulatory cells to go to the eye, or allow the regulatory cells to switch off aggressive cells more efficiently.

This may ultimately lead to the development and testing of appropriate new biological therapies for the treatment of patients with sight-threatening Uveitis, such as Birdshot Chorioretinopathy.