BUS had a fantastic afternoon on the Phoenician Thames Sailing Barge last Saturday 3rd May, thanks to our hosts John and Janet Hall, and our fantastic speakers, Prof Glen Jeffery from the Institute of Ophthalmology and Chris Hogg a clinical scientist from Moorfields Eye Hospital. Over 30 birdshotters and their friends met socially in the beautiful informal setting. Continue reading
The Birdshot Uveitis Society International facebook group has become super active over the last few months. Its membership has more than doubled with a membership of circa 150, involved in numerous discussion threads where people are able to chat about their Birdshot, get support from others with the condition or even just have a moan! If you haven’t visited the group and want to share information with other birdshot sufferers, you can drop in at https://www.facebook.com/groups/Birdshot/. It’s very easy to ask and answer questions and keep in touch. Although it is not as private a discussion venue as the BUS Birdshot forum, (where you have to be a member and logged in to see the posts,) people seem to like the familiar facebook format. There is real sense of camaraderie amongst a growing international community. Continue reading
Jonas Kuiper from Holland recently contacted us to let us know that a research paper on the characterization of Immune cells in the eye of two birdshot patients has recently been published. They successfully identified that the infiltrated cells are predominantly T cells and that they are directed to both retina and choroid. Although this has been assumed for decades, this research provided the first evidence that T cells directed against the eye are present in the eyes of birdshot patients. http://www.ncbi.nlm.nih.gov/pubmed/24530754.
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. Continue reading
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. Continue reading
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 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.