From CEO Laura Szutowicz, HAE UK

Groundhog Day! For those of you not familiar with the expression, the day is 2 February, when the groundhog is said to come out of its hole at the end of hibernation. If the animal sees its shadow – for instance if the weather is sunny – it goes back into its hole, which portends six weeks more of winter weather. It has now come to mean a situation in which a series of unwelcome or tedious events appear to be recurring in exactly the same way and gave the name to a film in which the same day gets repeated over and over.

I had thought that the UK was moving on out of the whole COVID-19 lockdown situation, until the Government put us all back into it after Christmas. The UK is still better off than many countries as at least we are allowed and encouraged to take exercise every day, but the strain is beginning to tell on many people.

That was one reason why we were very grateful to Dr. Mari Campbell for giving us her time and expertise in some Zoom meetings. Mari is a consultant psychologist specializing in rare diseases and particularly Primary Immune deficiency at the Royal Free Hospital in London. She has worked with some HAE patients in the past and we are hoping to help her and her team set up a similar service in the Royal London. 

Mari gave us an interesting insight into how stress happens, and that it actually is entirely natural, one of the ‘fight or flight’ responses that kept us safe from sabre-tooth tigers and nowadays helps us to do that impressive presentation for our boss! It is when it runs away that it becomes a problem, and the COVID-19 pandemic has become the modern day sabre-tooth tiger of which we are nervous.

Mari provided us with us many strategies for coping with and managing stress, and was extremely generous with her time and advice, also giving us resources such as this advice: Using Grounding Techniques during Covid-19.

This and many other resources Mari have provided can be found here: haeuk.org/advice-support/stress-anxiety

One of our members and HAE UK volunteers, June Cole, has not let the pandemic prevent her carrying on with her beloved singing. She writes:

“Hello, my name is June Cole, and I am a patient with type 1 HAE. I would like to share with you some of my positive experiences during this historic pandemic and lockdown.

I sing with many other people but overnight that stopped because of lockdown. The Rock Choir came up with the brilliant idea of organizing daily singing sessions live via Facebook and weekly sessions, tutorials and virtual gigs via Zoom, which hundreds of people joined during the pandemic. We also made recordings and a video which were used in aid of the Mental Health Foundation Charity to raise awareness and funds. We did this by recording from home individually using our phones to make a recording. Over 4,500 of us recorded the song ‘Keeping the Dream Alive’ in this way and then submitted our recordings to Rock Choir for all our voices to be included on a download single. This was released in December 2020 and went straight in at number 1 on both of the iTunes and Amazon download charts. This made everyone involved feel really uplifted!

These daily sessions and the recordings were great fun and a wonderfully joyous experience, keeping everyone’s spirits up and helping their wellbeing while in lockdown, in addition raising awareness and funds for the Mental Health Foundation Charity.

I also phoned my elderly relatives virtually every day to make sure they were okay and whether they needed anything. This was a great way to keep in touch with each other and help prevent loneliness.”

Many thanks to June for this inspirational piece. For anyone who wants to see the Rock Choir in action have a look and listen. And I defy anyone not to spend the day singing ‘My dog can do the cancan better than my cat can’!

Furkhanda Haxton, our volunteer for Scotland, is again taking part in the Kiltwalk which is being run as virtual event 23-25 April 2021. She will be raising money for HAE UK again and we are very grateful to her for this and all the great work she does for us. Please see more at  thekiltwalk.co.uk/charity. The Kiltwalk is extraordinary in that not only does 100 percent of money go to charity, but every amount raised in increased by 50 percent donated by the Hunter Foundation.

This is from when June organized a Rock Choir ‘FlashMob’ in aid of HAE UK.

We have also heard that our Iron Man, Paul Carroll is going to do a ‘Double Ironman’ Event, ‘The Brutal’ later in the year:

Keeping the best news to last: The UK is rolling out the coronavirus vaccination program and many of our members have already had their first vaccination. Most people have had no side effects, and one or two have reported mild reactions but in line with what has been previously stated. 

It has taken a very long time, but at last our HAE UK Expert Nurse Training Program is ready for nurses to access and complete. This is an on-line resource for registered nurses working with HAE patients. There are modules covering testing, genetics, treatment, home therapy etc. and each module finishes with a test. Once all completed and passed the nurse then receives a certificate of completion. This came out of conversation with Theo Grosse-Kreul, who is the Senior Specialist Nurse at Kings College, who suggested it and it has been thoroughly edited by our nurse advisors Christine Symons, Fran Ashworth, Emily Carne and John Dempster. The development of the course has been kindly sponsored by Pharming.

So, all good news and I am even starting to get a little hopeful that we may be able to once again think about having a ‘real’ Patient Day. For anyone that has not yet seen our presentations from November 2020, they are absolutely excellent and full of information – please have a look at www.haeuk.org/pd2020/.