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…
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
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.
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.
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.
Living with sight loss is something that every birdshotter worries about. For most of us, our loss of vision is quite gradual. Without treatment, we are liable to become severely sight impaired eventually. With better treatments becoming available, this is fortunately less likely to happen.
Julian Jackson – “Living with Sight loss”
Here Julian Jackson tells us what it is like to live with sight loss. He suffered from retinitis pigmentosa and in his 40’s lost his sight completely. http://visionbridge.org.uk
Below, Preeti Singla, a low vision specialists, tells about how to maximise our vision through the use of apps and equipment that do not have to cost a fortune. A copy of her apps and gadgets handout, is found here: https://birdshot.org.uk/wp-content/uploads/Maximising-your-visual-potential-Handout-2.pdf
Preeti Singla – “Maximising your visual potential
More information about Julian Jackson
After a long career in management consultancy and organising events in emerging markets, followed by five years as Director of Development and then Senior Adviser to a leading eye research charity, Julian launched the social enterprise ‘VisionBridge’ in June 2016, supported by a growing nationwide group of academic researchers, clinician scientists, clinicians and patient advocates. He is building on the work he started in 2014 to promote eye health, increase the awareness and understanding of sight loss and introduce the extraordinary world of eye research to the public, eye health professionals, patients and the wider visually-impaired community across the UK.
Julian lost his sight in 2010 to a retinal inherited disease and therefore has a personal as well as a professional interest in the daily battles being waged in hospitals and universities across the UK to prevent sight loss, treat eye disease, restore sight and improve the quality of life for patients through enhanced rehabilitation.
More information about Preeti Singla MSc MCOptom DipTp (IP) Prof Cert Glauc
Preeti is a Specialist Optometrist with over 15 years’ experience in profession, spanning NHS hospitals, community optometry and as the clinical supervisor for the undergraduate optometry degree at City University, London. She started her career in primary care (‘high street’ or community practice) but quickly realised that her passion lay in secondary healthcare and the management of eye conditions, rather than in screening and the commercial side of optometry. She worked for a number of years across both sectors and then in 2010 made the switch to working in the hospital service full-time. She has worked for The Royal London Hospital Whitechapel, Moorfields Eye Hospital and most recently for Buckinghamshire Healthcare Trust, covering Stoke Mandeville, High Wycombe and Amersham Hospitals. Her work in the hospital sector has covered a broad range of experience in both core optometry clinics and also in an extended role, working alongside ophthalmologists in paediatrics, glaucoma and retina specialities. She has a keen interest in low vision rehabilitation and too on the role of Low Vision Lead at the Royal London, working closely with low vision aid suppliers. Preeti has also written a number of articles the most recent being a series of three articles on low vision.
Birdshot Uveitis Society and Fight for Sight have co-funded a number of small grants for birdshot research. Here are video updates from the recipients of five of these projects. They were all asked to make sure that their talk was no longer than 10 minutes, with an additional five minutes for questions. Further project descriptions can be found at the following link. https://birdshot.org.uk/funded-birdshot-uveitis-research-projects/
Colin Chu -‘Investigating Birdshot using human induced pluripotent stem cell modelling’
Alastair Denniston – ‘Update of the Birdshot database and biobank’
Omar Mahroo – ‘Update on the RETeval device’
Philip Murray – ‘Health Utility’
Graham Wallace – ‘Update on iron overload’
Mark Westcott – ‘BOSU Study – How many new cases of birdshot each year?’
Further brief details about the speakers
Colin Chu PhD, FRCOphth, MA, BM, BCh, is a National Institute for Health Research (NIHR) Academic Clinical Lecturer at the University of Bristol and Bristol Eye Hospital, working with Professor Andrew Dick on gene therapy and ocular inflammation (uveitis). During ophthalmology specialist training he was awarded a Medical Research Council (MRC) and Fight for Sight Clinical Research Training Fellowship, gaining his PhD with Professor Robin Ali at UCL Institute of Ophthalmology. He has previously undertaken research at the MRC Laboratory of Molecular Biology in Cambridge, the Weatherall Institute of Molecular Medicine in Oxford and at the Save Sight Institute in Sydney.
Professor Alastair Denniston, MA, MBBChir, MRCP, FRCOphth, PhD, 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.
Omar Mahroo MA, MBBChir, PhD, FRCOphth, FHEA, is a consultant ophthalmologist with subspecialty expertise in retinal disease, managing patients at Moorfields Eye Hospital and St Thomas’ Hospital. He completed a medical degree and PhD at the University of Cambridge, and post-doctoral research at Cambridge and the Australian National University. He then commenced clinical house officer jobs in Cambridge, followed by ophthalmology training in London. His main research interest is understanding retinal function through electrophysiology. He has received funding from Fight for Sight, the Birdshot Uveitis Society, National Institute for Health Research (NIHR) and Thomas Pocklington Trust. He was recently awarded a £1.1m Wellcome Trust Clinical Research Career Development Fellowship to investigate disease mechanisms in patients with inherited retinal conditions and also the effects of common genetic variants on retinal function in healthy individuals, including variants related to myopia. His research is based at the UCL Institute of Ophthalmology and at King’s College, London where he is Honorary Senior Lecturer. He has been trialling the use of a quick-to-use hand-held electrophysiology device that could help manage patients in clinic.
Professor Philip I Murray MBBS, DO(RCS), PhD, FRCP, FRCS, FRCOphth, undertook most of his clinical ophthalmology training at Moorfields Eye Hospital, London and his basic science laboratory training at the Institute of Ophthalmology, London and the Department of Ophthalmo- Immunology, Amsterdam. He is Professor of Ophthalmology, Institute of Inflammation and Ageing, University of Birmingham. His laboratory research is focussed on understanding:
• why intraocular tolerance fails in uveitis
• what immune mechanisms initiate and drive the inflammatory response
• what can one do about it?
He is Honorary Consultant Ophthalmologist at the Birmingham and Midland Eye Centre (BMEC), Sandwell and West Birmingham Hospitals NHS Trust and runs two dedicated regional and supra-regional uveitis clinics per week. He enjoys the challenging and frustrating nature of uveitis but also finds it immensely rewarding. He is involved in clinical trials on novel therapies for uveitis and until recently he had a special interest in cataract surgery on the uveitic eye. He is part of the Birmingham National Centre of Excellence for Behçet’s syndrome. From 2004-2016 he was Secretary of the International Uveitis Study Group. He sits on numerous national committees, is section editor for three journals, an examiner for the Royal College of Ophthalmologists (RCOphth), external examiner for the Royal College of Surgeons of Ireland and past external examiner, Optometry BSc (Hons), Aston University.
Graham Wallace, BSc, PhD, is a Senior Lecturer in the School of Immunity and Infection, Birmingham University. He has published over 75 research papers in scientific journals as well as reviews in the fields of ocular immunology, Behҫet’s syndrome and immunogenetics. He has received grants from Guide Dogs for the Blind Association, Fight for Sight, and the Wellcome Trust. He is an enthusiastic communicator on the theme of immune responses in the eye and the effects of gene polymorphisms on ocular diseases. Graham is on the medical panel of the Behҫet’s Syndrome Society and speaks at meetings of patient groups on a regular basis.
Mark Westcott MD, FRCOphth, CCST, is a Consultant Ophthalmologist at Moorfields Eye Hospital, London, where he specialises in uveitis, and also at St Bartholomew’s and The Royal London Hospitals. After residency training in London he spent a Fellowship year in glaucoma at the UCLA Stein Eye Institute, Los Angeles. Thereafter he returned to Moorfields Eye Hospital to undertake a Specialist Fellowship in medical retina and inflammatory eye disease.
Mark has co-authored over 40 scientific papers and regularly lectures both nationally and internationally. He is an honorary Senior Lecturer at the Institute of Ophthalmology, UCL. His research interests include infectious uveitis, birdshot disease and visual dysfunction in glaucoma.
‘Birdshot Question Time’ – panel of patient and professional experts, chaired by Philip Murray.
An hour-long questioning and answer session at the end of the day where a panel of experts, both health professionals and patients, answered questions from the floor as well as questions that had been sent in advance.
Also, one of the consultants gave us written answers to the questions that were asked in our international birdshot Facebook group. You will find a copy of these written answers here: https://birdshot.org.uk/wp-content/uploads/Questions-for-the-Birdshot-Day-final-and-complete.pdf
Professor Philip I Murray MBBS, DO(RCS), PhD, FRCP, FRCS, FRCOphth
Phil is Honorary Consultant Ophthalmologist at the Birmingham and Midland Eye Centre (BMEC), Sandwell and West Birmingham Hospitals NHS Trust and runs two dedicated regional and supra-regional uveitis clinics per week. He enjoys the challenging and frustrating nature of uveitis but also finds it immensely rewarding. He is involved in clinical trials on novel therapies for uveitis and until recently he had a special interest in cataract surgery on the uveitic eye. He is part of the Birmingham National Centre of Excellence for Behçet’s syndrome. From 2004-2016 he was Secretary of the International Uveitis Study Group. He sits on numerous national committees, is section editor for three journals, an examiner for the Royal College of Ophthalmologists (RCOphth), external examiner for the Royal College of Surgeons of Ireland and past external examiner, Optometry BSc (Hons), Aston University.
He has published over 180 peer-reviewed papers, contributed numerous book chapters and authored four textbooks, including the highly successful ‘Oxford Handbook of Ophthalmology’. He has a keen interest in undergraduate ophthalmology teaching (previously national lead for the RCOphth), is an adviser to three national uveitis patient groups, helped set up a successful local patient involvement group in uveitis and is an advocate of the ‘patient voice’.
He is a fervent supporter of the English Championship side Brentford FC, and plays baritone sax in ‘Out of the Blue Big Band’ and ‘The Soul Providers’
Before the auction, Miles Stanford, Professor of Clinical Ophthalmology at Guy’s and St Thomas’ NHS Foundation Trust, gave a brief talk about the current research being done on Birdshot Uveitis, a rare and potentially blinding eye condition. Lord Archer did the honours as auctioneer, as usual managing to extract money from people but leaving them with large grins on their faces.
The day raised approximately £50,000 for the Birdshot Uveitis Society (BUS). John Hall and all those at BUS would like to say a huge and heartfelt thank you to everyone who contributed to this enjoyable and successful day.
Birdshot – Where we are now: medications and keeping yourself well
- Opening remarks and introducing the clinician’s view – Professor Andrew Dick
- Birdshot Medication and keeping well? David Makanjuola
- Uveitis Nurse specialist – Adam Mapani
- The role of the pharmacist and some Q & A’s – Mildred Johnson with the panel
Fight for Sight and Birdshot Uveitis Society joint small grants initiative and progress updates
- Introduction to the supported research projects – Professor Phil Murray
- Fight for Sight/BUS partnership – Julian Jackson
- Birdshot Biobank and database – Alastair Denniston
- Not just there to sit and look pretty – Omar Mahroo
- Supercell analysis for Birdshot – Laura Morton
- Red light influence – Professor Glen Jeffery
- Reducing Stress – Mindfulness – Mark Westmoquette
- Living with Birdshot – some personal reflections from 3 patients, Marion, Andy and Steve talking
Introduction to the National Birdshot Research Network and future developments
- Ozurdex, Iluvien, and Retisert – Carlos Pavesio
- Advances in retinal imaging – Reinventing the eye exam – Pearse Keane
- A bird of many feathers – Jonas Kuiper
- Polymorphic ERAP1 – Professor Edd James
- Landscape of Translational research – Richard Lee
Birdshot graphic designer David Bethell, has been doing the editing and putting them into a presentable format. David will be adding more when they are ready. It’s very enlightening to listen to each individuals story. https://audiomack.com/artist/birdshot-recordings
The interviews are with:-
- 5 members of BUS, living with birdshot
- 1 partner of someone with birdshot
- Health professionals, treating the condition
- Exhibitors at the Birdshot Day
- and Friends of BUS
There are further interviews from our first Birdshot day held in September 2010 which might also be of interest. https://audioboom.com/users/67238/boos