US edition of the Birdshot Survival Guide

The US edition of the Birdshot Survival Guide, edited by Patricia Clarke and Leanne Oswald

BUS is delighted to publish online, a revised edition of the Birdshot Survival Guide, especially for Birdshotters who live in the US. BUS members Patricia Clarke and Leanne Oswald collaborated on this and provide us with the revised edition.

At the moment there are not plans to print physical copies but we suggest that you may like to print off copies of the last few pages of the guide (page 34 – 39), to keep with your notes about your eye clinic appointments so that you can note down useful number that you can have readily to hand.

COVID19 and Birdshot Uveitis

The aim of this video is to give a list and a very brief rundown of resources for patients with Uveitis/Ocular Inflammation, not just in the United Kingdom but worldwide. These cover practical advice, where to go for support and wellbeing, and sources for self-monitoring. *Disclaimer: Have only just recovered from four weeks illness myself so voice is sounding really low energy. Sorry!* LINKS to resources mentioned in the video: UK Uveitis Resources: Uveitis National Clinical Study Group. Many of the resources highlighted in this video are to be found on our website here: https://www.uveitisstudygroup.org/ Twitter @UveitisCSG UNCSG COVID-19 portal: https://www.uveitisstudygroup.org/cov… UNCSG Patient FAQ: https://www.uveitisstudygroup.org/cov… Patient risk self-score grid: https://www.uveitisstudygroup.org/use… PinGU (Patient involvement group in Uveitis): https://www.uhb.nhs.uk/patient-involv… Olivia’s Vision UK (support for anyone affected by Uveitis): http://www.oliviasvision.org/ Twitter @OliviasVision British Society of Rheumatology https://www.rheumatology.org.uk/covid… Twitter @RheumatologyUK (Webinars advertised here) Versus Arthritis (Practical Information): https://www.versusarthritis.org/news/… Behçet’s Disease: https://behcets.org.uk/coronavirus-co… Twitter @BehcetsUK ——————- UK General Resources: NHS Hub: https://www.nhs.uk/conditions/coronav… Hand Hygiene: https://www.nhs.uk/live-well/healthy-… UK Government: https://www.gov.uk/coronavirus UK Govt: Guidance on social distancing and self isolation: https://www.gov.uk/government/publica… ——————- North America: American Uveitis Society Resources: https://uveitissociety.org/ Letter for patients on immunosuppression from MERSI: https://uveitis.org/coronavirus-disea… USA Government guidelines: https://www.cdc.gov/coronavirus/2019-… Canada Government guidelines: https://www.canada.ca/en/public-healt… France: https://www.gouvernement.fr/info-coro… IUSG in French: https://www.iusg.net/uploads/images/I… ——————- Australia and NZ: https://www.health.gov.au/news/health… https://arthritisaustralia.com.au/wor… https://www.health.govt.nz/our-work/d… WHO: https://www.who.int/emergencies/disea… ————————————————————————————- Self-Monitoring College of Optometrists A4 sheet for home vision checking: https://www.college-optometrists.org/… Amsler grid for macular problems: https://www.macular.org/wp-content/up… Home vision checking apps: Peek Acuity: https://www.peekvision.org/en_GB/peek… Kay iSight Test Professional app (useful for children above 18 months): https://kaypictures.co.uk/product/kay… ——————- Mental Health Mind.org.uk general advice: https://www.mind.org.uk/information-s… NHS Every Mind Matters tips and ideas: https://www.nhs.uk/oneyou/every-mind-… NHS One You apps to help reduce stress, anxiety and to improve mood: https://www.nhs.uk/oneyou/apps/ Online communities: Healthunlocked.com CRIS helpline for 24/7 counselling: https://www.crisistextline.org/topics… Twitter: @crisistextline ——————- For Parents and Children PRES video: https://wordday.org/wp-content/upload… This is a new and useful resource for families of children with inflammatory eye disease and especially those on immunosuppressive meds. https://www.uveitisstudygroup.org/use… The CCAA site: https://www.ccaa.org.uk/ CCAA info on shielding for children and teenagers: https://www.ccaa.org.uk/wp-content/up…

COVID 19 Virus advice

We know that it is a worrying time for Birdshotters across the world, and we have been inundated with requests for advice. With regards to all questions, and to prevent any possible confusion concerning the coronavirus, please visit the NHS site below.

NHS Advice:https://www.nhs.uk/conditions/coronavirus-covid-19/

We can only repeat the same advice of washing hands, good hygiene and speaking with your own doctor about how the virus, if caught, could effect your medical treatment. Each country’s advice is changing on an hourly basis so it is best to go to the official websites who will be regularly brought up to date.

Managing the smooth running of the charities Facebook group is a daily job for the admins and we all take it very seriously, so please bear with us as we try to keep this group on course for that which it was designed; a safe, support and information centre for everyone diagnosed with Birdshot Uveitis.


And please don’t forget that the best person to keep you informed about your particular medical case is your own health advisor.


*For those not in the the UK please heed the information from your own country’s medical advice experts.*For those on any medication, please contact your personal consultant/general practitioner and follow their advice.


NHS Advice:https://www.nhs.uk/conditions/coronavirus-covid-19/

World Health Organisation (includes regions and choice of languages):
https://www.who.int/emergencies/diseases/novel-coronavirus-2019

France:
https://www.gouvernement.fr/info-coronavirus

USA:https://www.cdc.gov/coronavirus/2019-ncov/index.html

Canada:https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection.html

Birdshot research update March 2020

Medical research takes money, and we’re grateful that BUS members continue to find imaginative ways to fundraise for research. However, research also takes time, so we thought you might like to know how some of our BUS-sponsored research projects are progressing.

Genetic control of iron levels in birdshot uveitis

What Dr Graham Wallace, University of Birmingham, wants to investigate is the association between the presence of HLA-A29 (which is carried by nearly all patients with birdshot) and an alteration in another gene which can cause iron overload in the body. Iron is essential for retinal function, and its levels are controlled by iron-regulating proteins. However, too much iron in eye tissues can cause damage. Dr Wallace intends to examine the genetic makeup of 75 birdshot uveitis patient samples from the UK Birdshot Biobank and also investigate the samples’ iron levels, looking for any connections between iron levels and birdshot. 

Doing medical research often meets obstacles. In Dr Wallace’s study, the obstacle has been a lack of birdshot patient blood samples because setting up the UK Birdshot Biobank took much longer than expected. As the number of patient blood samples increases in the biobank, the study should be able to proceed. 

We look forward to hearing more about this project.

A closer look at birdshot retinal cells

Changes in the retina occur in birdshot uveitis, particularly in the retinal pigment epithelium (RPE) cells. Until now, it has been very difficult to obtain samples of eye tissue from birdshot patients for studies. Dr Gonzales-Cordero and colleagues at University College London Institute of Ophthalmology wanted to find out if it was possible to use a technique called induced pluripotent stem-cell (iPS) modelling to generate RPE cells from birdshot patient’ blood samples. This would enable the cells to be studied in detail.

The investigators have successfully achieved this, even though the birdshot patients who donated blood samples were all receiving immunosuppressant treatment. The birdshot-derived RPE cells were found to be HLA-A29 positive, as were the birdshot blood sample donors.

These results are an exciting step forward because the iPS-derived RPE cell lines will become a continuing birdshot research resource. The researchers hope that these cell lines might eventually provide a laboratory method for testing new uveitis treatments or gene therapies. 

Are there any early signs or symptoms that predict birdshot’s course?

This is a question that, till now, has been frequently asked but for which there have been few definite answers because birdshot’s progress is very unpredictable, even when treatment is started early. Mr Mark Westcott and colleagues at Moorfields Eye Hospital, London, have studied a large number of their birdshot patients’ medical records to look for possible answers.

They found that birdshot patients who at diagnosis had either normal Humphrey visual fields, or good dark-adapted electroretinogram (ERG) test results, or the absence of retinal atrophy, were most likely to have good treatment outcomes. Reassuringly, having birdshot diagnosed at a young age, or having macular oedema and poor vision at diagnosis, did not appear to affect the chances of eventually achieving a good treatment result. 

These findings should allow ophthalmologists to be able to give newly-diagnosed patients some guidance on the possible progress of their birdshot.

Creating a Health Utility Value for birdshot

Receiving a diagnosis of birdshot, learning to live with its effects on vision and dealing with the side-effects of treatments all contribute to alterations in health-related quality of life (QoL). Professor Philip Murray and colleagues at University of Birmingham set out to identify the effects of birdshot on QoL, not only to assist doctors in understanding their patients’ problems better, but also to assist in wider official decision-making in evaluating treatments for birdshot. Creating a Health Utility Value specifically for birdshot – a patient estimate of their overall health state – would be a valuable evaluation tool.

Birdshot patients were recruited to complete a series of internationally recognised standardised QoL questionnaires. The results were combined with a set range of eye-related clinical observations made on each patient.

Preliminary results indicate that QoL is affected in birdshot patients, but not to the same extent as in patients with other types of uveitis affecting both eyes, Future studies could include asking patients to complete specific depression and anxiety questionnaires. This would add to the value of this pioneering research into QoL in birdshot.

NICE approval granted for iluvien implant

Finally we are allowed to broadcast the fact that Iluvien implants are now approved by NICE for prevention of relapse in recurrent non-infectious uveitis (NIU-PS) which includes birdshot uveitis. https://t.co/YWx9qxXL2k

As some of you already know BUS played an important part in the appraisal process by providing our expert statement as well as our very own patient expert witness, who, as well as providing written evidence, attended the actual appraisal and we understand spoke eloquently at the hearing about her own experiences. Uveitis consultant Laura Steeples from Manchester Royal Eye Hospital, provided her professional expertise in the assessment process. 

From feedback received, NICE took into account what the professional and patient experts had to say, but of course cost is always critical, so we understand that negotiations on this front were required. 

One more tool for our doctors to use, but we note that the guidance says: ” …if clinically appropriate.” so it is unlikely to be handed out too freely because of the cost considerations and is likely to be offered only to patients who really need it.

Following publication of its Final Appraisal Document, NICE requires that clinical commissioning groups, NHS England, and local authorities comply with its recommendation on ILUVIEN® within 3 months and within 2 months for NHS Wales.

Mr Carlos Pavesio, Specialist Uveitis Consultant Ophthalmologist at Moorfields Eye Hospital, said: “It is welcome news that there is now a long-acting intravitreal steroid available on the NHS for preventing relapse in patients with NIU-PS, as this is a treatment priority for this condition. Preventing vision loss due to relapse has a huge impact on patients’ quality of life.”

Complications resulting from intraocular inflammation can damage the eye, so timely diagnosis and effective management of NIU-PS are imperative to avoid potentially severe vision loss.

36-month data from the PSV-FAI-001 study, presented at The Association for Research in Vision and Ophthalmology (ARVO) annual conference in April 2019, showed that significantly more eyes treated with ILUVIEN®experienced no recurrence* of uveitis over three years compared to those in the treated control group (34.5% of eyes treated with ILUVIEN®versus 2.4% treated control).

The secondary outcomes of the study showed that patients treated with ILUVIEN®had a reduced need of adjunctive systemic or immunosuppressant treatments.

Please find a link to the iluvien.co.uk website for more patient information. NICE

World Eye Hospital Annual Meeting

I gave a ten-minute talk about the power of the patient’s voice at the World Eye Hospital Annual Meeting on Friday 7th June. This was a good opportunity to tell the BUS story to a wider ‘world’ audience. Below is a tweet which sums up the presentation, with photographs showing me standing at the podium and also next to the BUS display panel with Moorfields Eye Hospital uveitis consultant Narciss Okhravi. It is quite surprising how much we have achieved since we first set BUS up in 2008.

Annie Folkard

7th Birdshot charity shoot

Dylan from the Royal Berkshire Shooting School giving the instructions for the day

The Royal Berkshire Shooting Ground provided the perfect venue for twenty seven teams of four and attracted both novice shots and experienced guns to show their competitive skills, representing companies as diverse as Almacantar, Canary Wharf Contractors, Faithful & Gould, McLaren Properties, Malcolm Hollis and Sir Robert McAlpine. Organiser, host for the day and prime mover behind the Birdshot charity fundraiser was the John F Hunt Group. 

Now firmly established as the ‘go-to’ event in the London construction industry calendar, the 7th. annual Birdshot Uveitis charity clay pigeon shoot was again supported by a huge contingent from the UK’s property and construction sectors and proved to be both a beautiful day and a great competitive and fundraising success. 

Breakfast briefing over, a morning of testing clay shooting followed and after some ferociously competitive performances, Top Gun went to leading architect, Robin Partington with a score of 93, whilst Top Team prize was claimed by Cushman & Wakefield, with Digby Flower, David Tye, Andy Miles and John Rand accruing a collective score of 428.

Shooting over for the day, John F Hunt’s Group Chairman, John Hall, himself a sufferer from the visual impairment caused by Birdshot Uveitis, introduced fellow sufferer, Fiona Gee, who related her own experience of the debilitating condition. Richard Lee, Deputy Director of NIHR Moorfields Clinical Research Facility and Lead for Experimental Medicine, Inflammation and Immunotherapy, then explained how monies raised were helping to fund important research into this horrendous yet little-known eye disease. 

The auction that ended the day was skilfully and amusingly conducted by David Hunt of John F Hunt Power and bidding wars broke out across the crowded dining room for lots including weekends in Naples and at the George V in Paris, all helping to raise a stunning total of £72,000. As John Hall concluded; “Today has been a brilliant success both in informing more people about Birdshot and in raising research funding. I would simply like to send a heartfelt vote of thanks to everyone who took part, for their generosity and that of our prize donors.” 

May 29th2019

Birdshot day 2018, SESSION 1

Birdshot Uveitis Society (BUS) is delighted to bring you the talks from our Birdshot Day held on 17th November 2018. We are very grateful to the media team at Moorfields NIHR Biomedical Research Centre who have kindly edited and put the presentations together for BUS.

Below you will find the videos of the talks given in Session 1. These provide an excellent introduction to birdshot uveitis and also what is happening to your immune system when birdshot starts to develop. Alastair Denniston’s five-minute talk explains what a ‘Birdshot POEM’ is (Patient Outcomes Experience Measures): a quick snapshot survey about how the patient currently is feeling about their vision.

These five-minute and 10-minute talks explain this complex subject in a way that is easy to understand. The videos may be helpful to show your friends and family if they are interested in finding out more about what your birdshot diagnosis means for you.

Session 1: Introduction to Birdshot and the immune System and the Birdshot POEM

Laura Steeples – “Birdshot Uveitis

Richard Lee – “The immune system explained”

Alastair Denniston – “Birdshot POEM

More about Laura Steeples MBChB(Hons), FRCOphth

Laura is a Consultant Ophthalmologist at Manchester Royal Eye Hospital (MREH). She graduated from the University of Glasgow in 2006 and completed specialist training in the North Western deanery followed by two years of sub-speciality training in uveitis at MREH and Bristol Eye Hospital. Laura was appointed as a Consultant in adult and paediatric uveitis in 2016 and is an honorary lecturer at the University of Manchester. Laura is involved in uveitis research and has been an investigator in several national and international clinical trials. Laura regularly presents at international and national meetings and publishes in peer-reviewed journals. She is an active member of several networks including the Uveitis National Clinical Study Group, Paediatric Ocular Inflammation Group, European Society of Retina Specialists and the Birdshot Uveitis Society. She also contributes to patient safety work for the Royal College of Ophthalmologists.

More about Richard Lee BMedSci, BMBS(Nott), MRCS(Eng), MRCOphth, PhD

Richard is a Consultant Ophthalmologist specialising in uveitis. He has clinics in both Moorfields and Bristol Eye Hospitals. However, he is also an immunologist working to understand how the immune system and the eye interact in the context of diseases such as birdshot. To do this, he supervises and works with teams of clinicians and scientists in the UK (principally at UCL, Bristol and Birmingham) and in the US at the National Eye Institute in Washington DC. His official job title is lead for experimental medicine for inflammatory eye diseases at the UK’s Biomedical Research Centre for ophthalmology, funded by the UK National Institute for Health Research (NIHR) and based at Moorfields
Eye Hospital.

More about Professor Alastair Denniston, MA, MBBChir, MRCP, FRCOphth, PhD

Alastair is Consultant Ophthalmologist (Uveitis and Medical Retina) at University Hospitals Birmingham NHS Foundation Trust and Honorary Reader at the University of Birmingham, UK. Alongside Prof Philip Murray, he leads the Birmingham Regional Birdshot Uveitis Clinic which is utilising novel means of imaging to try to improve detection of active disease. He also leads on the development of the National Birdshot Biobank and the Birdshot Registry (database) with Charlotte Radovanovic, Birdshot database project manager. He was awarded an MRC Clinical Research Training Fellowship in 2006, and completed his PhD in Ocular Immunity in 2009. He regularly publishes research papers in scientific journals and is active in research related to birdshot, with a particular emphasis on improving our ability to monitor the activity of birdshot and other forms of uveitis. To further this work, he established the EQUATOR consortium (www.equator.vision) in 2013 with Mr Pearse Keane. Alastair is keen to promote public awareness and patient engagement with ophthalmic research and has been actively involved with the Medical Research Council (MRC) Max Perutz Science Writing Prize and the British Science Festival.

Next Session(2)

Birdshot Day 2018, SESSION 2

Interviews with Jennifer Thorne and Marina Mesquida

BUS was fortunate to have Professor Andrew Dick to undertake these interviews.

We were delighted and honoured to welcome Professor Jennifer Thorne to the 2018 Birdshot Day.  She and several of her birdshot patients had made the journey to the UK from Baltimore in the USA specially to take part. Professor Dick asks Jennifer Thorne about her work:  what led her to specialising in birdshot uveitis and other inflammatory eye diseases.

Dr Marina Mesquida, a former research student of Professor Andrew Dick, travelled from Switzerland to attend the Birdshot Day. Here she is being quizzed by Andrew Dick about her move from the world of birdshot research in a hospital setting to a very different environment in one of the larger pharmaceutical companies based in Switzerland



Brief notes on the participants:

Professor Andrew Dick BSc(Hons), MBBS, MD, FRCP(Ed), FRCS(Ed & Lond), FRCOphth, FMedSci, FRSB, FARVOwho is Duke Elder Chair and Director of University College London, Institute of Ophthalmology, Faculty of Brain Sciences. He is Head and Chair of Ophthalmology, University of Bristol, and the lead clinician for the Regional Ocular Inflammatory Service, South West England. He also serves on Faculty and is Theme Lead for Inflammation and Immunotherapeutics, Biomedical Research Centre – Ophthalmology, Moorfields Eye Hospital and UCL Institute of Ophthalmology, UCL.


Professor Jennifer E Thorne, MD, PhD is Chief, Division of Ocular Immunology and Uveitis Cross Family Professor of Ophthalmology and Epidemiology at the Wilmer Eye Institute, Johns Hopkins Hospital, Baltimore, Maryland, US. She is a board-certified ophthalmologist and an expert in the evaluation and management of patients with uveitis and other related immune-mediated disorders. Dr Thorne participates in numerous research projects on the clinical and treatment outcomes of uveitis, including white spot syndromes such as birdshot chorioretinitis and paediatric uveitis. She is national protocol chair of the MUST-sponsored POINT study on uveitic macular oedema; principal investigator of a study in the effectiveness of the dexamethasone implant in the treatment of uveitis. Her research, funded by the National Institutes of Health (NIH) and other agencies, is focused on understanding which treatments for uveitis offer the best balance of effectiveness and safety to preserve patients’ vision and quality of life in a cost-effective manner.

Marina Mesquida MD MSc PhD is an ophthalmologist clinician scientist. She obtained her degree in medicine and surgery at the University of Lleida, Spain, then completed her residency in ophthalmology at the Hospital Clinic Barcelona, where she graduated with numerous research awards. After undertaking a Master’s degree (MSc) in autoimmune diseases, she studied for a PhD in ocular immunology and inflammation at the University of Barcelona, followed by postdoctoral training at the University of Bristol, UK. She served as a consultant ophthalmologist specialising in medical retina and uveitis at the Hospital Clinic of Barcelona for 10 years, where she was also appointed head of the Ophthalmology Clinical Research Unit at the Fundació Clínic per a la Recerca Biomèdica.Marina has authored more than 50 peer-reviewed publications and 20 book chapters, with her major scientific interests being the role of interleukin 6 in the pathogenesis of macular oedema and immunological dysregulation in retinal diseases. In 2017 she received the Early Career Clinician Scientist Award from the Association for Research in Vision and Ophthalmology (ARVO) Foundation. She currently serves as Translational Medicine Leader in Ophthalmology as part of the Roche Pharma Research and Early Development team in Basel, Switzerland, where she develops new treatments for retinal diseases, a job which combines her enthusiasm and passion for science with a strong commitment to patients.

Next Session (3)

Birdshot Day 2018, SESSION 3

Professor Russell Foster CBE, FRS, FMedSci

Sleep and the lack of sleep is something that that birdshotters tend to suffer from, so we were delighted and honoured to be able to get the world-renowned professor of sleep and circadian rhythms to be our guest speaker. Below we present his fascinating talk: ‘The eye and regulation of biological time’ which is followed by a series of very interesting questions from the audience in a separate film clip.

More about Russell Foster

Russell Foster is Professor of Circadian Neuroscience, Head of the Nuffield Laboratory of Ophthalmology and Director of the Sleep and Circadian Neuroscience Institute at the University of Oxford. He is a Fellow of Brasenose College, Oxford. Russell’s research interests span the neurosciences, but with a focus on the regulation and generation of sleep and circadian rhythms, and what happens when these systems go wrong across multiple areas of health. He has published over 240 peer- reviewed scientific papers and four popular science books on sleep and circadian rhythms. For his discoveries, he has received multiple prizes and honours, not least election to the Fellowship of the Royal Society in 2008 and the Academy of Medical Sciences in 2013. In 2015, Russell was appointed as a Commander of the British Empire (CBE) for services to science and awarded a DSc from the University of Bristol.

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