Birdshot Uveitis Society Blogpost #4.
Josette Abruzzini: Hi Annie. Thanks for joining us on this fall day! Here in Pennsylvania the weather is cool and I’m drinking hot tea. What is your favorite beverage this time of year?
Annie Folkard: Right now I'm enjoying one of my favourite things to drink - lemon and ginger tea. I use a shop-bought tea bag and add a slice of lemon and sliced ginger to intensify the flavour.
Josette: Sounds great! I love that you refer to a shop-bought tea bag. Being a Canadian, I get that you Englishmen love your tea!
Annie, you have truly made an impact on the international Birdshot community, but before we talk about that could you tell us a little about your own Birdshot story?
Annie: I think my story is pretty typical, I was diagnosed in 2004 but had issues with my eyes for several years before that. I did the usual thing of visiting opticians and getting different sets of spectacles, until one day I was asked to do a visual field test. I was seriously unable to do it with one of my eyes. Several attempts over several days were no better, so the optician asked if I would like to be referred to a local eye clinic. Unbelievably the diagnosis was almost instant, even before a blood test, because of what he saw in my eyes and how I described my symptoms. It was a perfect match for Birdshot Uveitis. You can read more about my story on the BUS website at https://birdshot.org.uk/my-story/
Josette: The BUS (UK) website has so much information of value for Birdshot patients. What were the early days of the Society like? What were your main concerns? And how did you grow it into such a respected international community?
Annie: Rea Mattocks, another Birdie, and I set up the Society back in 2008 after we met at a Birdshot conference in Boston. The conference was run by Dr. Foster from MERSI, Boston. Rea and I were so inspired by this meeting that we decided we had to do something about getting Birdshot better known in the UK. So when we got back home, we set about forming the Birdshot Uveitis Society, as we decided to call ourselves.
We knew we needed to get Birdshot better known in order to get it better diagnosed, and also to get the optimum treatment for all Birdshot patients. At the time, treatment was very dependent upon whether the person who treated you understood that Birdshot needed to be treated aggressively. Otherwise you risked losing significant vision over time, so it was very much a postcode lottery.
The combination of talents that Rea and I brought to setting up the charity were very complimentary and we also already knew our graphic designer David Bethell, who quite early on designed our brilliantly identifiable logo. With the help of a consultant from Moorfields, we organized our first Birdshot Day in 2010. It was very much a do-it-yourself affair, but none-the-less it was a huge success and formed the foundation of the Birdshot community. It has since developed worldwide and grown exponentially.
I think we managed to grow into such a well-respected international community because we set it up in a professional way. We were very upfront in our approach. We were lucky in that we had a very good response from literally everyone we approached. Luckily, it was quickly recognized that we were filling a huge need.
Josette: Can you tell us a little about your professional relationships with leading Uveitis specialists and Birdshot researchers?
Annie: One of the things that we did quite early on was to set up a National Birdshot Research Network with the leading UK Uveitis consultants. The Network plays a very active role in helping us achieve our objectives in terms of Birdshot research. Not only do we meet twice a year, but we communicate with them by email, and more recently via ZOOM so they can provide us with advice that we need in relation to birdshot. The Research Network also advises on patient-related matters. It's very much a two way process. Our strong links with the consultants in Birmingham has enabled us to set up our Birdshot database and the collection of blood and DNA samples for the UK bio-resource for rare diseases. More information on this: https://bioresource.nihr.ac.uk/media/fg4fabeb/web-summary-bcr-v1-02072019.pdf.
At the same time our fundraising, in partnership with the UK charity Fight for Sight, has helped to
pay for the development of these cornerstones to future birdshot research. BUS also helps pay for our dedicated research manager, Charlotte Radovanovic. Our ability to fundraise quite substantial sums of money via our annual clay pigeon shoot has played a major part in helping to get this up and running.
Josette: Your pioneering efforts in advocating for Birdshot patients have earned you the respect of many researchers. What has been your biggest surprise in all of this?
Annie: I suppose my biggest surprise in all of this is how easily it all came together and how much help people and other organizations were prepared to give. After almost 12 years we are still growing and moving things forward. The charity is entirely set up and run by volunteers, and whilst we are still a tiny organization we have had great success in changing the way patients with Birdshot are treated in the UK. Our consultants talk to each other and network in a way that has seldom happened before. There is now a Uveitis Study Group, bringing this group of specialists together to encourage the exchange of ideas and information. This is so different from what happened historically, when doctors and researchers viewed each other as competitors. I am delighted to say that there is now a growing collaborative approach.
Undoubtedly the work we do to get new treatments approved by NICE, the UK body that decides what drugs can be used by our NHS, has significantly benefited people with Birdshot as well as helped to provide better drugs and devices to treat our condition.
Josette: There's been some recent progress in Birdshot Uveitis research. How would you compare recent areas of interest to those in the past? Where do you think future research efforts are headed?
Annie: I see the future use of Artificial Intelligence helping doctors get better information from scans, helping with a quicker diagnosis and better treatment selection; also DNA testing will guide treatment choice. I am excited about the work that is being done by the young Dutch biologist Jonas Kuiper who has made Birdshot his passion. I see his efforts to work with researchers, doctors and patients from across the UK and Europe as a really positive step toward having larger cohorts of patient samples; thus, he’s gaining a deeper understanding of the biology of Birdshot. This will lead to better individualized treatment options. I am really looking forward to reading the Birdshot biology book (made simple) so we can all understand what he has discovered.
Josette: Through the Facebook page you’ve guided us birdies in supporting each other as well as in sharing our ups and downs. You manage to maintain a positive vibe on the site. What kinds of things do you enjoy about the online interactions that you see?
Annie: I have to say that I love it when you hear a Birdie giving comforting advice and support to new people joining, especially when you know that maybe a year ago, they were in a very different place, in the very depths of despair, not able to cope with their diagnosis and the prospect of frightening treatment. We are also very fortunate in having members with medical backgrounds who are always able to give very sensible and level-headed advice. I also love the way little local groups of members have developed in places as far away as New Zealand and Australia, and in areas where Birdshot is extremely rare. It really helps people feel connected.
Josette: We’re all in awe of the beautiful quilts that you make. Each one is artistic, unique and so beautifully crafted. Who inspired you to take up quilting, and what do you most enjoy about it?
Annie: It is little known that I originally trained in fashion and textiles, and have always had a passion for ethnic textiles. Apart from a brief period spent at the BBC, I have not been employed in the arts world or done anything creative to earn a living or in my spare time. However, on a trip to Australia to visit my oldest school friend, she encouraged me to take up quilting as a hobby for my retirement. You can read more about this and see examples of my work on the Quilters' Guild website.
I just love colour and pattern, and putting different colours together, so you can imagine I am enormously relieved that so far my colour vision has been very little affected by my Birdshot. When I was at my worst, I could not thread a needle and really couldn't see well enough to sew. There were so many floaters disturbing my vision that sewing would have been the last thing I could imagine doing in my old age.
Josette: Annie, the quilts on your Quilters Guild page are simply stunning!
One word that applies to our community of birdies is “friendship”. I understand that you are friends with Patty Clarke and Leanne Oswald, two of our BUSNA board members.
Annie: I’ve known Patty and Leanne in the virtual Birdshot world for a long time. I first met them in person when I was invited to make a presentation at the ARVO annual conference in 2017. (shown in picture: Patty Clarke, Annie Folkard & Leanne Oswald.)
It was a great honour to be invited to present at an international doctors-only conference. Leanne and I decided that it would be a good opportunity to have a little Birdie get together at the same time as the conference, and we were lucky to get both Jonas Kuiper and Professor Jennifer Thorne to fit us into their busy schedules.
It was after this trip to the US that I started to encourage the formation of what has now become BUSNA, an American parallel version of Birdshot Uveitis Society. You cannot imagine my delight that BUSNA has gotten set up and active. It seems the timing is due partly to the COVID19 crisis that gave key US members a little more time than usual. It's so much better if we can share the work of publicizing birdshot and fighting for better treatment. I am really looking forward to the future progress of Birdshot research.
Josette: Could you tell us about a quilt that you recently sent Leanne?
Annie: Leanne knows that I love ethnic textiles and she sent me two pieces of fabric that she had acquired during her work in Kenya and Tanzania. With the Kenyan fabric I made a Joe Cunningham-influenced four patch improv, adding in more pink, yellow fabric to make it into a vibrant quilt. I love the fact that these traditional cloths include writing on them in Swahili. The words on Leanne's fabric, says. "the goodness you have done to me I will never stop praying for you” - so that is the name I gave to the quilt.
Josette: Annie, I have to say that it’s pretty cool that your quilts have made it across the pond, not unlike the Birdshot community that you and Rea started. So many of your gestures of friendship and support stretch across the globe.
On behalf of birdies everywhere, and also members of the BUSNA community, a sincere thank you to Annie for making a major difference in the diagnosis and treatment of Birdshot Uveitis, and for sharing her stories with us.
We are thrilled that BUS (UK) has welcomed BUSNA. Annie and her colleagues have inspired us to develop into an impactful organization here in the U.S. and Canada.
With apologies to both our British and American readers for the hodge-podge of spelling. A few words have been “Americanized” and a few others left as “British”! Long may we coexist!
Birdshot Uveitis Society of North America (BUSNA)is a volunteer organization comprised of persons diagnosed with Birdshot Uveitis. It provides information and support for patients and raises funds for Birdshot Uveitis research.
Visit our BUSNA website!