Uveitis and Coronavirus
Where to find support and guidance
The current global pandemic can be a very difficult time for patients with Uveitis — a spectrum of eye diseases, the core feature being inflammation in the eye. I work as a Medical Ophthalmologist and have trained in Uveitis and Ocular Immunology.
Spending my time recovering from COVID-19, I became aware of how challenging a time this is for patients who suffer from Uveitis and their families by reading social media accounts. There are so many questions about what to do with medications, self-isolation and shielding, and whether to attend hospital appointments. A number of Uveitis patients are on treatments which dampen the immune system, and this increases the risk of infections such as COVID-19. Everything, from travel to clinic and sharing the waiting space with other patients can understandably cause anxiety.
It became clear how important it is to have trustable advice. The video at the top of this article provides a list of platforms and websites which give guidance, practical advice and support with wellbeing and mental health.
Coronavirus and Uveitis
Having a weakened immune system either because of a disease or because of taking immunosuppression increases the risk of catching this disease. But there are also other factors which affect transmission and severity of illness such as:
- Viral load: The number of viral particles being carried by an infected individual and shed into their environment and Infectious Dose: The amount of viral particles needed to cause an infection
- Host genome: Each person has a genetic profile which might make them more or less susceptible to a particular disease. Unfortunately, this can’t be changed.
- Host immune system: Relating to the genome, we each have an immune repertoire which may make us more or less likely to react to coronavirus. This impacts things like the cytokine storm, which is an overreaction of the immune system
- Gut microbiome: The vast ecosystem of organisms that live in our digestive system and contribute to how we respond to diseases.
Sources of Guidance around the World
This is a global pandemic and we can all learn from each other, from patients and healthcare professionals around the world.
In the United Kingdom where I am from, a useful hub of information is the Uveitis National Clinical Study Group, which is here. This has a COVID19 information portal which collates guidance created by a panel of Uveitis consultants, adult and paediatric rheumatologists. The FAQ for patients is a particularly useful source. This group is currently hosting COVID-19 webinars with a group called PiNGU — the Patient involvement group in Uveitis, and these are advertised on the site.
Olivia’s Vision @OliviasVision is the UK’s main organisation which deals with information, support and advice for anyone affected by Uveitis, and has a number of useful links for patients in the current pandemic. COVID-19 hubs are also available on Rheumatology websites such as the Versus Arthritis site and the British Society of Rheumatology website, which also hosts webinars. Elsewhere, specific conditions such as Behçet’s disease have their own advice site.
In North America, both the US and Canadian governments have national guidance for Coronavirus. The Uveitis Society in the States has a set of resources, and there is a useful sample letter in the Uveitis.org website. Australia and New Zealand both have regularly updated guidance, and Arthritis Australia has a lot of useful information.
In France, the government coronavirus website is complemented by useful French-language guidance from the International Uveitis Study Group. The WHO also keeps its Coronavirus portal updated regularly here
FAQs for patients with Uveitis
This is an unpredictable virus, and things can change regularly. The updated FAQ on the Uveitis CSG website approaches questions such as:
- What to do if you’re showing symptoms suggestive of COVID in terms of self-isolation
- What to do with drugs including immunosuppressants
- What happens with usual clinic appointments
- What happens if having a flare of Uveitis in the current situation
- What the level of risk might be, given background traits and medications (including those stopped recently).
Self-monitoring at home is invaluable for chronic conditions during this pandemic, but can also help give data to an Ophthalmologist or Optometrist who has to make a decisino remotely.
For checking vision at home, the College of Optometrists have an A4 sheet available here, which can be printed for checking at home. Macular problems can also be self-monitored with an Amsler grid. There are a number of useful smartphone applications such as Peek Acuity and the Kay iSight Test Professional app for testing vision in children aged 18 months and above.
This unprecedented pandemic. virus is causing chaos around the world, and it is a difficult period for everyone. It can be doubly difficult when suffering from a health condition, being at risk, and self-isolating for a long period. During this time, it is absolutely normal to struggle with mental wellbeing. Bearing in mind that each individual is different, there are useful resources which can help in different ways:
- Mind.org.uk offers general adivce for wellbeing during self-isolation.
- Every Mind Matters gives practical tips and ideas for staying well at home
- NHS One You also has a list of various helpful apps and platforms which span different methods of maintaining wellbeing, reducing stress and anxiety and improving mood.
Community can be very important. This may include social media groups such as Facebook. Healthunlocked is a social platform which has various specific online communities covering Vasculitis, Behçet’s disease, Macular society.
If you’re struggling a lot, please speak to someone. The CRISIS help line can be a good source for 24/7 counselling @crisistextline
For Parents and Children
A really useful video for parents and children is this one, produced by the Paediatric Rheumatology European Society, which gives 10 practical recommendations for children and young people with rheumatic conditions.
The Uveitis Study Group website has an updated useful resource for families of children with inflammatory eye disease and especially those on immunosuppressive meds.
The CCAA site is also really useful, including useful information on shielding for children and teenagers.
Take care and stay safe.