From CEO Laura Szutowicz, HAE UK

Much to my surprise, I am already writing another report for Global Perspectives. At the time of the last one, we in the UK had come out of lockdown, and there was a gradual return to normal. I was kicking myself, thinking we had decided to make the UK Patient Days virtual. The Patient Days are an enormously important part of our calendar, and they are hugely enjoyable, a chance to catch up with old friends and an opportunity to involve the new ones. We had kept in touch with our members via very successful Zoom meetings, and our wonderful expert panel gave freely of their time to give presentations and answer questions, but I was not sure that the virtual event would work.

Well, I am so happy to have been proved wrong! The virtual event has been a massive success, due in no little part to Rachel Annals, who collated and edited the various presentations. Our fabulous panel of experts proved how we have clinical support that is absolutely top class, and the patients who were kind enough to share their patient stories yet again showed how having HAE does not stand in the way of living your best life.

We started with the ‘virtual cocktail party’ on Friday evening. The evening pre-meeting reception has become a feature of the physical Patient Days, and I was a little worried that it might be Rachel and me staring at one another over a glass. However, lots of friends turned up, notably Furkhanda (who is always a major support at all our events) drinking something that I think was vaguely berry-flavored (hence part of her “five a day” fruit and veg!), Nikki Pitt with an enormous red wine…

One of our Trustees, Tim Crouch and his wife Sue, definitely won the “best turned out” prize both being in immaculate evening dress. We had circulated a menu of cocktails and snacks, and it was wonderful to see everyone enjoying themselves. Seeing everyone in the little Zoom boxes is a bit like a box of chocolates – don’t know who to pick!

Other events were running over the weekend. People were reminded about the event by being sent an invitation card which was actually full of lovely flower seeds to plant for next year. We thought this was a better way of remembering the event than something that might get thrown away. The youngest members of HAE UK were sent a Percy the Pufferfish bag with a copy of the Percy book, “Nico’s Lunchbox”, some crayons and a coloring competition. The winners of each age group of the coloring competitions were Dean Harber, Charlena Goodier and Charlie Hill. Well done to them! And many thanks to all the other entrants.

Then on to the Patient Day itself. There were many presentations, some introducing the various people involved in HAE UK and what HAE UK can do for members. There was an excellent presentation by Ann Price, the founder of HAE UK, Henrik Balle Boysen and Hilary Longhurst detailing the background of why there was a need to start an organization and how they went about setting it up. We then had excellent presentations by various of our clinicians about topics:

  • “HAE – Why? How?” with Dr. Schuab Elkhalifa as the Superhero C1-INH
  • “Keeping Fit and Healthy with HAE” by Specialist Nurse John Dempster
  • Patrick Yong gave a reprise of his History of HAE as well as an update on the activities of the HAE Clinical Network
  • Scott Hackett was his usual expert self on dealing with children and young adults with HAE
  • Sorena Kiani gave a very interesting presentation on current treatments for HAE and what might lie in the future
  • Hilary Longhurst transmitting all the way from New Zealand presented on HAE and women
  • Mark Gompels and his Specialist Nurse Lisa Smith told us how important clinical trials are to furthering treatment and knowledge of HAE
  • Immunology Nurse Specialists Fran Ashworth and Christine Symons brought us up to date on the work of the nurse specialist – both these ladies have been tremendous supporters of HAE UK right from the start, and we are fortunate to have them!
  • Dawn Harper may not be familiar to most of the HAE community, but she is a well-known doctor on TV and radio in the UK, and she told us how to get the most from your GP appointment
  • Anthony J. Castaldo gave an update on the worldwide activities of HAE International.

There are also patient stories from Dana Shapiro, one of our Trustees, on how she climbed Mount Kilimanjaro, Scott Weddle and Paul Carroll. Scott and Paul are both amazing fitness people. The most important message from all their presentations is that anyone can do it but take it slowly and gradually build your fitness, don’t think it can all be done at once.

Then on Saturday afternoon, we had a live Q & A with Drs. Hackett, Yong and Kiani, Anthony J. Castaldo and Henrik Balle Boysen. We rather overran time with this, but it was very interesting. One of the topics was around having COVID-19 vaccinations, and the basic message was, discuss it with your care team, but the results so far are really promising. We also touched on the importance of mental health issues and how we need to recognize these to assist people who might otherwise just say “yes, I’m fine”.

The day finished with a very testing quiz, Rachel is our quiz mistress extraordinaire and never fails. Did you know wombats have cube-shaped poo?

Anyone who wants to view the presentations is welcome to visit www.haeuk.org/pd2020, and I hope you enjoy them!

A final bit of good news is that berotralstat, the oral prophylaxis treatment manufactured by BioCryst, is available in the UK under an Early Access Medicine scheme. This means that, even though it is not fully licensed, clinicians in the UK can prescribe it where they think appropriate. So, this is yet another product available to our clinicians to use for patients.

Stay safe everybody, best wishes for Christmas and let’s look forward to a better 2021!