Good outcome from steroid implants

An American study was published earlier this year, looking at the outcomes for Birdshot patients who had been on steroid implants (the longer name for these steroid implants is corticosteroid intraocular devices). 22 Birdshot patients were involved in the study which looked retrospectively (over a 3 year period) at the outcomes.

The outcomes were extremely positive, and showed that the steroid implants had significantly improved vision, controlled inflammation and in the majority of cases stopped the need for other medications. As always, there are some down sides – in the case of steroid implants the main side effects were a high incidence of the progression of cataracts and a high incidence of intraocular pressure (called glaucoma).

If you want to read the full study, go to the American Journal of Ophthalmology.

We at BUS, are really excited that there seems to be a growing number of suitable alternatives for people who are not responding well to oral steroids and various different types of immunosuppressants, or who cannot tolerate these medication regimes.

The importance of a published study is that it provides evidence for patients and consultants who might be struggling to acquire steroid implants from their primary care trusts or health organisation, or who are looking for alternatives to oral steroids and immunosuppression.

For those of you who attended the Birdshot Day in September 2010, you will remember that steroid implants were discussed at some length on the Day. There was one attendee who had these implants and was extremely passionate about them.

If you want to hear more about steroid implants for the Birdshot Day, please go to our clip on retisert implants at:

Since the Birdshot Day, we have heard from one attendee who says that the Day changes her life and equipped her with enough information to be confident in moving to steroid implants. She reports that she can now see clearly for the first time for many years without the aid of immunosuppressive treatment. We also know of another person who has been offered them on a special trial and a third person who is discussing this option with their specialist.

We are so pleased at the more rapid progress of alternative treatments and we are delighted that the Birdshot Day has equipped attendees with the means to work in partnership with their consultants to explore all possible options. We are even more delighted to see that so many more consultants are now listening to their patients and there is a two way dialogue and a real exploration of all options available. Let’s hope that we can also make some headway in finding out the reason we get Birdshot in the first place!

Bringing Together Patients and Specialists

This is the abstract for the poster that trainee ophthalmologist Nik Koutroumanos presented at the London, Kent, Surrey and Sussex Deanery Trainees conference last week.  It describes what happened at the Birdshot Day  and it caused quite a lot of interest there among the young doctors  who will have gone away from the conference much more aware about our particular rare condition.  There is great  value in educating future ophthalmologists, who are not yet commited to a subspecialty area of uveitis and who will be carrying the knowledge of Birdshot to the corneal, vitreoretinal and paediatric eye clinics that they will inevitably become involved in. Thanks Nik for helping to spread the word.

Purpose: Birdshot Chorioretinopathy (BCR) is a rare, chronic, poorly understood, bilateral posterior uveitis, which results in loss of visual function. The disease and its treatment have dire effects on quality of life. The aims of the project were 5 fold: 1) To reduce the sense of isolation of patients with BCR, 2) to raise the profile of the disease 3) to allow a two-way exchange of information between patients and professionals, 4) to obtain a better visual outcome and 5) to provide a base for research.

Methods: A Birdshot Day was organized by founders of the Birdshot Uveitis Society along with a team of healthcare professionals, public-engagement and audio-visual specialists. What patients wanted was the focus of the team’s efforts. The event allowed for extensive networking and exchange of ideas, talks by specialists and patient representatives and ‘Question & Answer’ sessions which addressed patients’ concerns. Structured anonymised questionnaires and formal interactive evaluation techniques were used to fully evaluate the success and short and long term impact of the day on both patients and professionals.

Results: 50 Patients & 26 supporters joined 50 healthcare professionals for the Patient Day. Data analysis demonstrated a significant improvement in patient knowledge (P<0.001). Results showed that the priorities of patients and clinicians were not necessarily the same. Whilst drug side-effects were deemed the major problem in terms of patients’ quality of life (55.8%), BCR patients prioritised research into aetiology (47.8%) in preference to research into better medication (31.8%). There was evidence that patients greatly valued meeting fellow sufferers (P<0.001). Results strongly suggested that patients’ sense of isolation was significantly reduced and the number of ‘hits’ on the BUS website in the 3-weeks following more than doubled to 67,000. To date, 4 of our 5 aims have been achieved.

Conclusions: We believe that this level of patient engagement should be encouraged. The Birdshot Patient Day proved a success. It has led to better understanding between patients and professionals. Patients have successfully directed and engaged into future research into their condition and future Birdshot Patient days are planned.

After the conference , Nik told us that  he found that many trainees  at the conference were  greatly interested in the concept of a patient day for a rare condition and he  also thought that it was most valuable to  be able talk to trainee ophthalmologists about the significance of involving patients  in research.

We look forward to results.

Our very first study!

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.

test_task

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.

Birdshot gets a mention on french TV

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.

JT Local 19/20 – Champagne Info

www.pluzz.fr

Toutes les informations de votre région.

Research Network

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….

Markmilesnarcisus

Forum

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

Medical students involved in Birdshot Day

4-med-students-AoME-2011

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 !

Birdshot Day in Paris

Ifl20110326

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