BUS is delighted to announce that we are once again a partner charity involved in the Fight for Sight Carrots NightWalks. These fun night-time sponsored walks are helping to raise thousands of pounds for research to prevent sight loss and to treat eye disease. Fight for Sight small grants awards have already benefited birdshot research. Continue reading
Birdshot retinochoroidopathy requires early therapy to limit damage, preserve vision and induce long-term remission.
Akbar Shakoor, MD, and Albert T. Vitale MD, Salt Lake City
- See more at: http://www.revophth.com/content/d/retinal_insider/c/42258/#sthash.UodcC2eS.dpuf
Albert Vitale was one of the speakers at the International Birdshot Symposium held in Boston, USA in September 2013.
The Research paper which we link to below was published in May 2013. It concludes that Birdshot retinochoroidopathy requires early therapy to limit damage, preserve vision and induce long-term remission. Published in the “Review of Ophthalmology” the paper is by Akbar Shakoor, MD, and Albert T. Vitale MD, Salt Lake City
- See more at: http://www.revophth.com/content/d/retinal_insider/c/42258/
The paper clearly makes the important point that:
“few patients maintain good visual acuity without treatment, with a 20 percent, five-year cumulative incidence of visual acuity of less than 20/200. Visual acuity may be limited by vitritis, cataract and cystoid macular edema, but the later phases of the disease are marked by significant photoreceptor loss and attenuation of electroretinographic amplitudes.”
It goes on to describe various treatments, comparing success rates. In relation to steroid mono therapy, however it is delivered he says:-
While periocular, ocular, intravitreal and systemic corticosteroids may be effective in the short-term management of vitritis and macular edema, they are of inconsistent efficacy in the long run. Unacceptably high maintenance doses of prednisone are required, resulting in frequent development of serious adverse effects when used as chronic monotherapy.
So if you are only being treated with steroids and are having this experience, it is a useful article to share with your specialist. Annie
Genetic Alliance in partnership with Alexion Pharma have now successfully raised 2000 hands to feature on a sculpture being made for Rare Disease Day. They are now extending an invitation to BUS members (amongst others with a rare disease) to come along to the launch which takes place at London’s Science Museum on 28th February from 12.00 – 14.00.
“The Genetic Alliance and Alexion Pharma would like to invite you to an event at The Science Museum on Rare Disease Day 2014 from noon to 2pm to unveil a statue depicting the support of the general public and well known people such as Jenny Agutter for people with rare diseases. With the launch of the Rare Diseases Strategy last week, and the involvement of high profile people such as Jenny and many others, the issue is one which is gaining much attention at the moment.
For every pledge made on the campaign website, a hand – the symbol of Rare Disease Day – will be created and an art installation has been commissioned to transform all the hands into a visual illustration of the commitment to raise awareness of rare diseases. The target of 2,000 pledges this year has been reached. The UK-based artist who is creating this work, Lisa Price, was chosen earlier this year in a competition run by the campaign organisers, The Genetic Alliance.
The sculpture will go on tour around the country in hospitals and schools to continue to raise awareness of this important cause.
Journalists and celebrities who have supported our campaign will be attending the event.”
Please see attached for a copy of your invitation and if you would like to attend quickly email: JohnsonS@alxn.com. Numbers are limited, so contact the organisers today, if you would like to go along. Birdshot Uveitis Society will feature in the press pack which will be presented to the journalists attending.
As part of the raising awareness campaign, the press have been invited along, and BUS will be featured in the press pack that they handing out. So please do look out for mentions in the press.
BUS has had an enquiry from a member who is in the UK who would like to email or talk to someone who has had a vitrectomy. Continue reading
Birdshot Uveitis Society has noticed that there have been a lot of new development on stem cell research in the news lately which offer new hope to those whose rods and cones are losing their function. Here are a few examples which caught our eye in January and which offer hope for Birdshotters in the future:- Continue reading
The National Birdshot Research Network (NBRN)
The National Birdshot Research Network will next meet on Thursday 13th March in London at St Thomas Hospital in the afternoon. Continue reading
Birdshotters who have been receiving Avastin® to deal with their macula oedema will no doubt be interested to read the results of this recent study which compares intravitreal bevacizumab (Avastin®) versus the steroid triamcinolone. The trial in question concerned people with diabetic macula oedema. Continue reading
We are often approached by people who are clearly worried about starting treatment for their birdshot. Because of this, we decided to publish a ‘question and answer’ section on the website. We hope it will provide you with some much-needed reassurance and answers to many of your questions.
Much of the ‘question and answer’ section may appear to be just common sense, but BUS thought it useful to gather the information together in one place. We also hope it will be helpful to those who are newly diagnosed and who are looking for advice on how to stay well while on immunosuppressive therapy.
Members of the the BUS Standing Advisory Committee and National Birdshot Research Network have been involved in validating this collected information.
If anything is not clear, or if you have other questions or concerns you would like to raise, please do not hesitate to get in touch.
Following on from the success of last year’s birdshot events, in 2014 BUS has decided to hold:
- two social events which will also incorporate talks about the research that BUS is helping to fund
- a fundraising clay pigeon shoot, and
- we will also be entering a team of walkers for the Fight for Sight Carrots Nightwalk
London social meetings and talks
The London social meetings and talks co-incide with bank holiday weekends. We hope this will make it easier to attend if you don’t live in the south east. The socials will provide an opportunity to socialise with other birdshotters and a chance to learn more about our birdshot uveitis research. The meetings will be held in the delightful environment of a historic Thames barge located in St Katherine’s Dock. As before, a buffet lunch and drink will be provided.
- Saturday 3rd May 2014 London social meeting with Professor Glen Jeffery from UCL and the Institute of Ophthalmology talking about the red light therapy research being carried out at Moorfields Eye Hospital.
- Saturday 23rd August 2014 with Dr Graham Wallace from Birmingham University talking about the development of the birdshot bio-resource centre and national birdshot database.
- 2nd birdshot shoot and auction on Wednesday 21st May 2014. The venue (Royal Berkshire Shooting Club) and cost of tickets will be identical to last year. If you are interested in taking part as an individual or entering as a team, (4 guns), please register your interest now, because places are already going fast.
- Carrot’s Night Walk – BUS will again be entering a team of walkers for the Fight for Sight Carrots Night walk. The date and details have yet to be confirmed, but it will be on a Friday night in September.
If you are interested in coming along to the socials/talks, or taking part in the fundraising events please do get in touch and make a note in your diaries. Email: info at birdshot.org.uk
Birdshot uveitis: current and emerging treatment options is the title of a recently published paper by Victor Menezo from Institut Catala de Retina, Barcelona, Spain; Department of Ophthalmology, Provincial Hospital Consortium Castellon, Castello, Spain and Simon R J Taylor Faculty of Medicine, Imperial College London, Hammersmith Hospital, London, UK; Royal Surrey County Hospital NHS Foundation Trust, Guildford
(Note: the whole paper can be downloaded as a pdf by following the link above and scrolling to the bottom of the abstract.)
This paper provides a comprehensive summary of current tests and treatments available for Birdshot Uveitis. It clearly makes the important point that, although central visual acuity can be preserved until late in the disease, it is not uncommon for patients to receive inadequate immunosuppressive treatment, leading to a poor long-term outcome in which peripheral retinal damage eventually leads to visual deterioration.
It also states that although “laboratory research continues to investigate the underlying mechanisms of disease, and clinical research is now being driven to improve the phenotyping and monitoring of this condition, it is becoming increasingly important to identify patients at risk of visual loss early so that they can be treated more aggressively with targeted therapies such as the newer biological agents.”
It states that “this approach requires the formation of collaborative groups, as the relative rarity of the condition makes it difficult for one center to accumulate enough patients for worthwhile studies. Nevertheless, results obtained with newer therapies, such as biological agents directed against particular cytokines or cell-surface receptors, demonstrate ever improving control of the inflammation in refractory cases, providing hope that the outlook for visual function in this condition can only improve.”
This paper certainly gives BUS hope. It is gratifying that it clearly endorses our belief about the best way forward, just at the point when we are getting collaborative work off the ground with the National Birdshot Research Network; and the development of the Birdshot bio-resource centre and Birdshot database.