Measuring the birdshot experience

Receiving a birdshot uveitis diagnosis, then coping with its effects on vision, plus all the clinic visits, tests and the effects of treatments, have profound effects on many areas of a person’s life. Identifying, measuring and raising awareness of the wider effects of a rare condition like birdshot requires research. Recently published work carried out in Birmingham, UK, has moved this topic forward.

The researchers directly measured several aspects of the quality of life experienced by a group of people with birdshot uveitis. This was done by using a series of questionnaires to create a ‘health utility value’ for birdshot.

The researchers hope that their work ‘could lead to a change in the way [birdshot] patients are assessed and the care they receive.’

Their research was supported by a grant from Fight for Sight/Birdshot Uveitis Society.

You can read about the research here: Creating a Health Utility Value for Birdshot Chorioretinopathy.

ZOE COVID-19 webinar on vaccines and a reduced immune system

The latest COVID-19 webinar (3rd March 2021) from ZOE, also available on YouTube, is about the COVID19 vaccines and specifically how well it works on those who have a suppressed immune system.   There is also an interesting blog for you to read if you don’t have the time to watch the ZOE webinar  but want to find out more about this which is linked to here.

The  British Society of Immunology have also produced a handy guide to the vaccines for covid-19  which may answer some of your questions that you may be anxious about.

We are also reposting the link to the UK’s Uveitis National Clinical Study Group Q&As current
advice (updated on January 8th 2021) which should answer many of your questions:

As always, contact your eye doctor and follow their instructions if you have any unanswered
questions about the COVID-19 vaccines and your personal immunosuppressant treatment

Q & A on the COVID-19 vaccines

Following on from the ZOOM webinar which was held in December about COVID 19 vaccines here are some of the questions and answers from it plus other useful information that you might want to read about the COVID19 vaccines including information on when you might expect to get it.

Thanks to everyone who asked useful questions and thanks to Sri Sharma from Oxford and Maheshi Ramaswamy who is a trialist on the Oxford Vaccine who has put this together for all Uveitis patients.

The Uveitis Study Group has developed information about vaccination against COVID 19. This can be found here along with a link to join the patients group of the USG and receive further information directly to your email.

Webinar about COVID19 Vaccines

This email came from Charlotte. It’s an invitation to a Zoom meeting on Thursday 10th December 2020 18.30 – 19.30 (UK time) which is extended to our Birdshot members. Please do get in touch if you would like to have the Zoom link sent to you!

“Hope you are all keeping well – especially during lockdown 2.0!

We are having another PInGU meeting in a few weeks’ time and we have managed to get Dr Christopher Green to speak about vaccines.

Please do feel free to forward the invite to anyone you feel may be interested as I think with all of the talk around vaccines at the moment this might be particularly beneficial to patients.

It’s on zoom again just like we did during the summer.

Best wishes,


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: Twitter @UveitisCSG UNCSG COVID-19 portal:… UNCSG Patient FAQ:… Patient risk self-score grid:… PinGU (Patient involvement group in Uveitis):… Olivia’s Vision UK (support for anyone affected by Uveitis): Twitter @OliviasVision British Society of Rheumatology… Twitter @RheumatologyUK (Webinars advertised here) Versus Arthritis (Practical Information):… Behçet’s Disease:… Twitter @BehcetsUK ——————- UK General Resources: NHS Hub:… Hand Hygiene:… UK Government: UK Govt: Guidance on social distancing and self isolation:… ——————- North America: American Uveitis Society Resources: Letter for patients on immunosuppression from MERSI:… USA Government guidelines:… Canada Government guidelines:… France:… IUSG in French:… ——————- Australia and NZ:……… WHO:… ————————————————————————————- Self-Monitoring College of Optometrists A4 sheet for home vision checking:… Amsler grid for macular problems:… Home vision checking apps: Peek Acuity:… Kay iSight Test Professional app (useful for children above 18 months):… ——————- Mental Health general advice:… NHS Every Mind Matters tips and ideas:… NHS One You apps to help reduce stress, anxiety and to improve mood: Online communities: CRIS helpline for 24/7 counselling:… Twitter: @crisistextline ——————- For Parents and Children PRES video:… This is a new and useful resource for families of children with inflammatory eye disease and especially those on immunosuppressive meds.… The CCAA site: CCAA info on shielding for children and teenagers:…

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:

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:

World Health Organisation (includes regions and choice of languages):




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.

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 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