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 https://www.birmingham.ac.uk/staff/profiles/microbiology-infection/Dr-Christopher-Green.aspx 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: 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):




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.