This is an important message especially for members who attended our First Birdshot Day.
We have just emailed out our 6 month post evaluation feedback survey. If you have not received yours, please check your spam and retrieve it, and if it’s not there, please tell us straight away! Continue reading
February 28th, 2011 was rare disease day. Actually, rare disease day is, of course, February 29th, but as it’s not a leap year this year, we held it on the 28th. Continue reading
For those of you who attended the Birdshot Day in September 2010, you will remember that one of the aims was to set up a research network. We are very excited that research has now started at Moorfields Eye Hospital, and at least two of our members are already involved in one of these studies.
The study involves the trialling of a Motion Detection Perception test.
This test will assess your ability to see a moving target on a computer screen, so it is painless and quick and easy to do. Designed by the Institute of Ophthalmology and Moorfields Eye Hospital, it has already successfully been used for detecting early stage glaucoma and the researchers want to see if this test may be equally useful for people with Birdshot.
Real Ale reported he had a long and detailed interview with a researcher and was feeling more optimistic because of the care and trouble being taken. They even arranged for his cataract to be removed because it was going to aid their ability to monitor his birdshot. David reports having a similarly detailed interview with a different researcher.
Both were really impressed with the real interest shown by the researchers. We are really excited by the spin off benefits of these research projects – the raising of the profile of Birdshot, the interest being engendered in researchers and the more focussed care that patients receive as a result.
We are so grateful to ‘Team Birdshot’ – all the consultants, specialists, patients, family members and BUS who set up the Birdshot Day and enabled research to start. We will keep you informed as the research network progresses, and most importantly, we will be letting you know of any opportunities to become involved in research. The current research project is using patients already attending Moorfields, however future research projects will include a much wider range of patients from around the country.
Sylvain Mignon www.horus-birdshot.fr has set up a Birdshot Foundation in France. He is raising money for Birdshot research in Paris. He told us about this television news item from yesterday’s news round up, which if you speak french or are interesed, you can view here. It is about three and half minutes into the video clip.
http://www.pluzz.fr/jt-local-19-20—champagne-info-2011-02-17-18h50.html
Premier reportage télévisé sur la maladie de Birdshot et sur HORUS BIRDSHOT – le rportage démarre apres 3mn30 d’émission et dure 2mn, merci de vos commentaires.
For English people : first program about the birdshot disease on french TV and specialy on the Horus Birdshot society , in french of course – thanks for any comments.
Rea and Annie, met with the consultants who we are working with to discuss our future research network and the projects that they will undertake.
This is a slow process but we are working hard to get this off the ground.
Below is a picture of us on Monday, when we met. (left to right: Mark Westcott, Miles Stanford, Narciss Okhravi, Rea Mattocks and Annie Folkard.) More about the projects we are trying to get off the ground later….
This is just to let you know that we have set up a discussion forum for the Birdshot Uveitis Society. You have to go to the forum and register there, before you can sign in and participate. (Also if you have any difficulties signing up, tell us you want to, and we can do this for you.)
We want it to be a private area where people can discuss issues and chat to other members so that you can become more involved in this growing community.
Currently we have over 180 members registered on our database. The membership comprises patients, supporters, relatives, and professionals.
We need your help with this. The forum is going to take a bit of time and your input to develop to see if it is something that you want and value, and works easily and efficiently for you. Please log on and leave your discussion threads and then feed back to us what works well and what doesn’t so we can improve and develop it. We hope you want to sign up and tell us what you would like us to do for you!
To get to the forum, click on the Birdshot logo on the right of the main page. To get back to the main Birdshot site, click on the logo at the top of the forum page, and you will find yourself back here.
Annie and Rea
Louise Ramskold, Rebecca Morris, Robert Wilkinson and Ruthiran Kugathasan, UCL medical students presented their posters about the Birdshot Day held in September 2010 to the AoME (Academy of Medical Educators) this Wednesday. Here they are pictured in front of their posters.
Titled: A Visual perspective, (right) and Birdshot Chorioretinopathy a Birdseye view (left), the posters set out what the students had learned from their involvement with the day.
Here are couple of quotes from two the students who were involved. As well as us patients learning a lot, it seems that the day has also helped to make our future doctors much more aware of a patients’ need.
“As a basis for medical education it taught us about a novel way of enhancing patient care, providing support for patients, their relatives and the professionals looking after them, decreasing medical errors by increasing awareness of the disease (and the potentially toxic drugs used to treat it) and optimising the strength of the relationship between the patient and health care professionals. Through this effort as medical students, we have not only learnt about the disease, but enhanced our communication, organisational and evaluation skills. We have discussed with patients and professionals the problems of caring for patients who have a chronic visually disabling disease (for which there is no cure) and understood the disease from the patients’ point of view.”
“The Birdshot Patient Day was not only a day in its isolation, but a whole project which has provided me with invaluable skills and memories. Being involved as a medical student in the organisation of the event from its very outset allowed me to see it grow from an animated vision to reality. In preparation of the day, we were given concrete tasks – such as generating means of evaluating the day and to investigate the, possibly differing, views of patients and health care professionals on various Birdshot related themes. With these tangible goals in mind, we set off learning about Birdshot, problems in treating and living with a rare and chronic disease, support structures available and the invaluable source of enthusiasm and knowledge from expert patients. I found it extremely inspirational to work so close with both patients and a whole range of health care professionals. The assignments gave obvious purpose to the work and as we attended seminars on Birdshot as well as interviewed patients, it quickly became clear how important mutual understanding and effective communication are in order to decrease needless medical errors and to improve the doctor-patient relationship. This innovative strategy of engaging medical students in patient days can be applied on a much broader scale and I personally feel that it should be something that more students have the opportunity to pursue – both for our own and future patients’ benefit.”
A Birdshot member said this just before Christmas about what we have done:
“If I ever come across someone with a rare disease without a support group, I’ll tell them to set one up along the lines of BUS!”
We are of course delighted to hear this !
We want to alert any one with Birdshot who lives in France that there is a Birdshot Day in Paris on the 26th March 2011. If you want to find out more about it, you need to visit the website http://asso.orpha.net/INFLAM/cgi-bin/w1/ and/or email them for more details. We know that this is an annual day and that it is part of a Birdshot research intitiative. We saw it mentioned on the inflamoeil website and also on a new site started by Sylvain Mignon. He is an artist with Birdshot, who has set up a Foundation in France with the objective of raising money for new Research into Birdshot, being undertaken in France.
http://www.horus-birdshot.fr/topic/index.html
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.
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