Boston Birdshot Symposium 2013

Last week we were in touch with Alison Justus from MERSI concerning the video footage of the September 2013 Boston Birdshot Symposium which is going to be made available on-line. We are delighted to report that it should be ready early in the New Year and as soon as we have it, we will post the link on the BUS website.

In the meantime, the PDF below shows the posters that were distributed at the US Boston Birdshot conference.  They describe the latest published Birdshot research coming out of MERSI.

Birdshot Research Posters

The posters are:

  • Assessment of TH1, TH2 and TH17 Cells in Birdshot Retinochoroidopathy: P Yang and C S Foster
  • Combined therapy of cyclosporine A and mycophenolate mofetil for the treatment of birdshot retinochoridopathy: a 12 month follow-up  RA Cervantes-Castaneda , LA Gozalez , M Cordero-Coma, T Yilmaz and CS Foster
  • Regulatory T-Cells in Peripheral Blood of Patients with Birdshot Retinochoroidopathy: S S Siddique, L Amorese, L Almulki, A M Sueves. C S Foster
  • Risk factors associated with relapse of Birdshot Retinochoroidopathy: A E Radwan R Oarujg, U Baheti, M Austin, CS Foster
  • Infliximab treatment of patients with Birdshot Retinochoroidopathy:P Artornsombudh, O Gevorgyan, A Payal, SS Siddique, D C Foster

 

Donna’s infliximab (Remicade®) experience

We really welcome receiving your stories as they can be very helpful especially for newly diagnosed Birdshotters to read.  There is nothing like hearing first-hand about stories of treating Birdshot Uveitis successfully to give you hope and help make you realise that there can be life after a Birdshot diagnosis.

Recently I was in touch with Donna,  (I met her at the Boston  2013 Birdshot conference) as I wanted her to share her experiences of cyclosporin followed by Remicade®, with a birdshotter from Puerto Rico who had recently written in to BUS and was wanting to communicate with other birdshotters before making her decision about her next treatment option.

We asked Donna if we could share her experience on the BUS website.  The answer was yes,  so this is her story.

“After my diagnosis four years ago here in Edmonton, Alberta, Canada, I was put on prednisone initially to get a jump on the inflammation. I learned of Dr. Foster in Boston, who apparently sees the most Birdshot patients, and my family insisted I go to see him. As per Dr. Foster’s protocol, I went on his cocktail of mycophenolate moefetil (CellCept®) and cyclosporine and weaned off the prednisone after 3 months. I was on this protocol for 15 months. My Birdshot stopped progressing but none of the symptoms reversed and I continued monthly injections in both eyes to control ongoing macular edema. I had many not-so-nice side effects from the cyclosporine that I was willing to put up with, thinking it was helping, but eventually it attacked my kidneys and I had to stop. I then found out that the amount and severity of the side effects probably meant the drug wasn’t really working for me all that time. Having said that, I met MANY patients at the recent International Birdshot Symposium in Boston who have had success with cyclosporine with NO side effects.

Dr. Foster then recommended I continue with the CellCept® and add Remicade®. While I waited for my insurance to approve the Remicade® my vision plummeted. Seven days after starting Remicade® I experienced a dramatic improvement in my vision! After 14 days I was driving again! My symptoms began reversing, the macular edema stopped (yeah, no more eye injections after two years!) and my vision continued to improve. I do have some permanent damage (from before the Remicade®) that doesn’t really bother me any more now that I am used to it and I am seeing better than I have in four years. And the only side effect I have experienced on Remicade® are some sinus issues that are easily controlled. Remicade® has been a miracle drug for me! Dr. Foster says the current thinking is a minimum of two and preferably three years symptom-free before weaning off all meds.

I don’t know what your health insurance is but it might be a major factor in your decision. cyclosporine and CellCept® are covered by my health care plan. While Remicade® is approved for use in many autoimmune conditions here in Canada, Health Canada has not yet approved it for use in eyes because there have not been studies done with adequate numbers here! It was a hassle getting approval from my husband’s company plan but they finally did approve it. The plan covers 90% of the cost but it is still extremely expensive. I would be inclined to say try the CellCept® and cyclosporine first because so many patients seem to have success with that. The Remicade® is a great back-up.”

Remicade® is given via an infusion in a hospital.  It is rarely available in the UK unless other treatments have failed or are not tolerated.  A special funding application has to be made.  There is also the inconvenience of having to go every 4 or 6 weeks to have the infusion and this generally takes a couple of hours to do.

For further information about a recent research study on infliximab please see: http://www.ncbi.nlm.nih.gov/pubmed/23177362

If you would like to tell others your Birdshot story, please do write it down so we can publish it for our members to read.

 

 

 

Novel treatment for birdshot to be trialled at Moorfields

 Can exposure to 670nm infra-red light improve retinal function and structure?

BUS is delighted to announce forthcoming research into a novel treatment for birdshot which is being trialled at Moorfields Eyes Hospital. The Director of Medical Retina and Uveitis, consultant Carlos Pavesio, the lead researcher, will be investigating whether using a particular wavelength of light will reduce inflammation in the eye and improve retinal function and structure in birdshot uveitis.

Please note, that before everybody rushes forward to volunteer, the patients selected from Carlos Pavesio’s clinic will be invited to participate in this research only if they fulfil the necessary criteria, and initially, only 10 to 12 patients will be required. His research team aims to study the effects of 670nm infra-red light treatment on patients with ‘grumbling’ birdshot disease, with their signs of inflammation continuing to be treated with medication throughout the trial.

Funding for the project

Half of the money for this research proposal was raised by birdshot walkers on the 2012 Fight for Sight ‘Carrots Night Walk’. We are collaborating with Fight for Sight, the main UK charity dedicated to funding eye research to prevent sight loss and treat eye disease, who have matched our fundraising to help pay for this novel piece of research via their jointly funded Small Grant Awards programme.

Targeted treatment

Birdshot is an eye disease with no known involvement of other parts of the body. Because of this, effective treatment directed just to the eyes would be a big step forward.

670nm infra-red is a part of the natural light spectrum. The energy levels and wavelength of the 670nm light used in the study are lower than those of indirect light on a spring morning. This light wavelength is also emitted from conventional light bulbs, but it is absent from strip lights and also absent from all the new low energy eco-friendly domestic light bulbs.

Study patients will receive 670nm light treatment from a specially-designed light. Treatments will be given on weekdays for two weeks for a total of ten treatments. Each light treatment lasts one minute. Only one eye per patient will be treated but the other eye will be observed as a ‘control’ for comparison.

In active birdshot uveitis, there is a measurable delay in response to the 30Hz ERG flicker test stimulus, so before the first light treatment for each patient in the trial, a baseline comprehensive ERG will be done. During the trial, patients will be given further ERGs before and after each light treatment, and these ERGs will be performed with a hand-held ERG device (RETeval) where the electrodes are placed on the skin under the eye. These pre- and post-treatment ERGs will check if the light treatment has improved the ERG response.

It will take no more than two minutes to do the study ERG tests, and the eyes do not have to be dilated. The ERG results will be immediately available, so the clinicians will quickly know if there are any improvements in the eyes.

Depending on the results of this small trial, the researchers aim to run a larger study over a longer period of time to assess the usefulness of this special light therapy as a treatment option for birdshot.

RETevalColourSee the Youtube video of the RETeval ERG device by clicking this link

This project combines the skills of the medical retina department at Moorfields Eye Hospital with the experience of using this therapy in the laboratory environment of the Institute of Ophthalmology. Both places are world leaders in addressing ophthalmic problems.

Here’s to success with this study. We will be very interested to hear how the project progresses.

 

 

Birmingham gets birdshot registry and bio-bank resource centre underway

BUS is delighted to announce that two exciting research projects are about to commence.

 1)    the development of a National Birdshot Bio-Resource Centre and;

 2)    the development of a National Birdshot Uveitis Registry.

These two projects are coming to fruition thanks to the hard work of Birdshot Uveitis Society supporters who have helped raise the money and also thanks to the imagination, ingenuity and resourcefulness of clinicians and research scientists who are involved in the National Birdshot Research Network.

The Bio-resource Centre project is being jointly funded by BUS and Fight for Sight, the main UK charity dedicated to funding eye research to prevent sight loss and treat eye disease, via a jointly funded Small Grant Award of £15,000.  50% of the costs has been raised by Birdshotters who took part in the 2012 Carrots Nightwalk, a six and 15 mile charity walk, with matched funding from Fight for Sight.

 The development costs of the National Birdshot Uveitis registry is being funded by BUS with money our supporters have donated over the last year and donations from the BUS 2013 Shoot which is our major fundraiser.  This award will be administered by Fight for Sight.

Thank you so much to everyone for your time and generous support. We wouldn’t have got this far without it!

World’s first birdshot uveitis biobank project

This research proposal is one you may have previously seen mentioned here: establishing in the UK the world’s first birdshot uveitis biobank. Biobanks collect and store donations of anonymised patient samples of blood, urine and other tissues. Approved researchers can then use these materials, feeding back their research data to the biobank. This adds to the original information held about the samples, which increases their usefulness to future researchers.

Rather than set up an independent birdshot biobank, it makes economic sense to use an existing biobank. The established Infectious Diseases Biobank at King’s College Hospital, London, has expanded to include collections of samples from patients with inflammatory conditions. This means that the Birmingham-based researchers’ proposal to set up the birdshot biobank within the biobank at King’s College Hospital fits in well with King’s existing work.

The project will start by recruiting a small number of birdshot patients from St Thomas’ Hospital, London, Moorfields Eye Hospital, London, and the Birmingham and Midlands Eye Centre, to donate samples to the biobank.

Clinical data from the National Birdshot Uveitis Registry (see below) would accompany the biobank samples. The combined resources of the National Birdshot Uveitis Registry and the National Birdshot Biobank would enable a great variety of statistically-valid and useful studies to be performed on large numbers of birdshot patient samples.

It is hoped that the birdshot biobank will eventually provide the opportunity for all UK birdshotters to contribute to research by donating their samples. Our involvement will provide the keys to help researchers start to unlock some of the mysteries of birdshot and to improve its treatment.

Developing a UK-wide National Birdshot Uveitis Registry

To be statistically significant, medical studies need to be done on large numbers of patients. Because birdshot is a rare disease, it has been difficult up to now to recruit enough patients to do useful research. Although large studies of up to 80 birdshot patients have been carried out in several European centres, similar scale studies have not been conducted in the UK, principally because birdshot patient information is not held in one place. Creating a national registry database of UK birdshot patients would provide a resource of information on birdshot which would have many potential uses.  

The proposed National Birdshot Uveitis Registry (NBUR) will collect and hold clinical data on birdshot patients centrally, including test results such as angiograms and OCT scan images. From the initial pilot study involving data from a few patients at University Hospitals Birmingham and the Birmingham and Midland Eye Centre, the eventual aim is for all UK birdshot patients to be invited to register with the NBUR.

The first step in the proposed study will be to develop a patient details database at University Hospitals Birmingham, test it and perform some data analysis. The database will then be tried out with data from a small number of Birmingham birdshot patients, then modified as necessary, and then piloted at National Birdshot Research Network partner sites in the UK.

One use of the registry data will be to accompany the samples sent to the UK birdshot research biobank (see above). Other proposed uses for the data include identifying patients suitable for clinical trials, collecting drug safety data, especially for newer treatments, and eventually being able to identify ‘best practice’ and promote better care by enabling treatment centres to compare the progress of their patients within the context of a national picture.

University Hospitals Birmingham already develops and operates national databases through their established Rare Disease Service, so this experience will be invaluable in setting up the National Birdshot Uveitis Registry.

 

 

 

Sight Loss and Vision Priorities Report

Earlier this year, Birdshot Uveitis Society took part in the  Sight Loss and Vision Priority Setting Partnership which uniquely captured the views of patients, relatives, carers and eye health professionals to identify what research into sight loss and eye conditions should be addressing. It is rare that those with direct experience of conditions are able to influence the research agenda and we at BUS were delighted to participate.

Taking part in something like this is so important in helping to get a rare condition like Birdshot Uveitis better recognised.  It has really helped to get us on the map in terms of getting research done.   It is easy to forget that until very recently Birdshot Uveitis was considered incredibly rare affecting very few people.  By raising the profile and forming a network we are getting a better idea of the true picture.

If anyone wants a hard copy of the report sent to them they can get in touch with us or Fight for Sight to get their own copy.

The section you will probably want to look at is the ocular Inflammatory eye disease section( Page 31).  Many Thanks to our members who helped participate in this process.

A PDF of the report is attached here.

Flu Vaccine and Pneumonia Vaccine

If you haven’t done so already, and are taking immunosuppressants, please go and get your flu vaccine from your doctors!  A Pneumonia vaccine (Pneumococcal vaccine) is also recommended by some specialists.

WARNING

There is no evidence to show how easy it is to catch flu from someone who has had the live flu vaccine administered by the nose and the risks are probably quite small for birdshotters, but the best advice we can give is “Get your flu jab now!”

PS  I’ve just booked my appointment!

Annie

 

 

Raffled Quilt raises £356.00

We are delighted to tell you that we recently received a cheque for £356.00.  This was raised through the sale of raffle tickets for this beautiful handmade quilt. (below).

quilt

It was made by BUS member who got in touch with us a few months ago to say that her quilting group had decided to nominate BUS as the beneficiaries of a raffle being held at the Royston Arts Festival at the end of September. Below are a couple of picture of some of the other quilts which were also on display.

Quilting exhibition in HItchin raises money for BUS via a raffle of a quilt

Quilting exhibition raises £356.00 for BUS by raffling a handmade quilt

Thank you so much for your support.  We are delighted to receive the raffle proceeds and  also learn that a lot of interest was generated about Birdshot Uveitis as a result of the raffle.

Art Quilts1

 

 

 

 

Christmas card 2013 for sale

BUS Christmas card 2013Once again the Birdshot Uveitis Society’s unique Christmas card has been designed for us by Birdshot Uveitis Society member David Bethell.  From next week (15th October) they will be available for people to purchase.  All profit from the sale of these cards will support the work of the Birdshot Uveitis Society.

Cards measure 140mm x 140mm and are printed on a quality card.  They come in packs of 10 with white envelopes and are priced at £3.95 per pack.  The greeting inside the card is “Merry Christmas and a Happy New Year”.

To order your cards:

Please simply click add to cart button below, type in the number of packs of cards  you wish to purchase, click update and follow the instructions using either a credit card or Pay Pal to pay for your order.




If you wish to have cards sent to you overseas please email us with your request and we will invoice you with the correct amount to pay via Pay Pal and will dispatch them to you once we have received payment.

You may also order via the post by sending your order and cheque made payable to Birdshot Uveitis Society to BUS Box 64996. London SW20 2BL.

Postage and packing rates

Country No of packs                                                          Rate
 UK 1 – 5 packs £3.25
UK 6 – 10 packs £6.00
More than 10 packs Please email us with your order so we can calculate your postage.
Rest of World 40% of purchase price, minimum £4

Last date for UK orders to allow posting to you before Christmas: 13-Dec-12  Purchases after this date are delivered at your own risk of late delivery

If you want us to send cards overseas, please make sure you allow enough  time for delivery.

Thank you!

 

Sight Village Event 5th and 6th November 2013

We have been asked to advertise this exhibition and the details are below.  Also attached here is a pdf poster for the event.  Please also see below for details.

Annie for Team Birdshot

Queen Alexandra College presents Sight Village London 2013

at Kensington Town Hall London W8 7NX on 5th November 10.00am until 4.30pm and 6th November 10.00am until 4.00pm

Admission is free

Unmissable for employers, professionals, end users, public sector.

QAC Sight Village events are the UK’s leading exhibitions of technology, equipment and support services for people who are blind or partially sighted experiencing age related sight problems.

QAC Sight Village is organised by Queen Alexandra College, Birmingham, a National College for People with Visual Impairment and/or other Disabilities.

Carrots Night walk success! Over £7,000 raised

photo5It’s not too late to contribute to the teams efforts!  You can do so by visiting http://www.bmycharity.com/birdshotcarrotsnightwalk.

Thank you to all the walkers who took part in the Carrots Night Walk on Friday 20th September and helped to raise over £7000 towards a future Small Grant award for Birdshot Research.  This is a stunning result from a small group of Birdshotters, their friends and family.

photo1

We had walkers travelling from as far as Leeds to the London walk and one walker who lives in Shrewsbury who walked in Birmingham.  It was Lesley Fisher and Claudia Wilson-Barrett’s 2nd Carrot walk for BUS.

Many of you will also know eye clinic sister, Claudia Wilson-Barrett from your visits to the Moorfield’s and Croydon University Hospital eye clinics.  This year she did the 6 mile walk accompanied by her two small daughters.

Many thanks to Lesley who bravely took on the roll of team co-ordinator, making sure that people met up on the night and providing some of the photographs for the website!2 Birdshotters and a friend View across Thames

photo2

Triumphant walkers afterwards

Before the walk above, and below,  after it was all over.  We can’t believe how fresh you all look!

We cant thank you enough!

Triumphant family team from Leeds with Lesley Fisher

Triumphant family team from Leeds with Lesley Fisher