RareDERM Community – PEM Friends: The Joys of Coronavirus

Isobel Davies, of PEM Friends, shares how COVID-19 has changed how PEM FRIENDS is connecting with their community.

Don’t get me wrong. I have nothing good to say about this awful disease. Like the curse attributed to Confucius though, we are certainly living in interesting times.

It’s been easy to see the anxiety levels rise amongst our PEM Friends. The Facebook Group has never been so active and we instituted a weekly chat on Zoom to alleviate feelings of isolation and uncertainty generated by “shielding”. This meeting still has a good and lively attendance even 14 weeks in.

It looks as if “shielding” for those majority of us who are immunosuppressed and in the UK will continue for some weeks to come and many of us are happy to be isolating given the recklessness displayed by some of our countrymen and women as lockdown rules are relaxed.

But I do have something positive to say about our unexpected and unwelcome quarantine.

At the beginning, we were contemplating some minor activity including updating the website and tweaking some of our communications. PEM Friends operates quite happily through the closed Facebook group although information was being provided rather inadequately via the current web pages to newly diagnosed people who found their way there, or to people not able or willing to use Facebook.

It isn’t to say we weren’t occupied. We were participating in 2 or 3 studies into Bullous Pemphigoid and, more generally, Autoimmune Bullous Diseases. These seem to have slowed as the medical contributors have been deployed to more urgent assignments.

But our time and energies on PEM Friends were gently consumed whilst we got on with our otherwise busy lives.

Then Covid-19 and lockdown.

So now our energies are being fully consumed by a lot of activity that was needed but didn’t seem urgent enough.

The new website has still to be finalized and, although not launched yet, its creative author has dedicated a page to Covid-19 guidance issued by Government, Medical and other authorities. It has helped with the confusion that still abounds and can be found at www.pemfriendsuk.co.org.

As a result of the new website, we have been re-writing much of the material as well as reviewing and developing our “brand” and commissioning a new logo (done for free by a professional expert).

The new website will be launched in July and hopefully allow us to use the opportunity to build awareness and reach new audiences. The timing could be good to coincide with slightly quieter times for the medical professionals.

We are applying for a Government grant set up for small organizations affected by Covid-19, to improve communications during these “interesting” times. We are new to the idea of grant applications, so our fingers are firmly crossed.

We have renewed our efforts to get to members who are not on Facebook and will continue to pursue all efforts in this area. The Zoom weekly chats will continue until attendance reduces as a part of this.

And PEM Friends continue to develop as a source of advice and encouragement to each other. I have been so proud and so appreciative of watching the ever-increasing offerings made to each other by this group.

Hopefully, we will have a return to “normal” and even “better” lives when it’s over and a vaccine has been found. But, for the time being, I can rejoice in having the gift of time that is a side effect of our response to this nasty little virus.

Isobel Davies
Isobel is the leader of PEM Friends, a UK group supporting people with the Autoimmune Bullous Diseases, Pemphigus and Pemphigoid and their carers.