We spend a lot of time sifting through the Facebook posts seeing that people are still tolerating increases in their attack rate and saying ‘oh, that is just having HAE’. We cannot emphasize enough that if people suddenly start having more attacks than normal, or they don’t seem to respond to treatment this is something they must discuss quickly with their care team. It is very likely that there is some simple reason for this, be it a nasty cold leaving a sinus infection that then triggers more attacks than normal – but it can and must be dealt with. We find that far too many people are content to ‘put up with’ rather than do something about it.
We all know how emotional stress can affect HAE, and many of you will remember that we sponsored Pippa Adams to carry out her Psychology Masters dissertation. This was recently published in The Bulletin of Health Psychology, a very prestigious publication for Pippa, who has also presented at international meetings on the subject of HAE and how it affects. University Hospital Cardiff Immunology Department is running another project we are sponsoring. It is using ‘Fitbits’ to see if improving physical fitness helps to reduce HAE attacks, and many of our members are already enrolled in it. This will be run as a clinical trial so that we can look forward to another publication in due course.
The Immunology Department at Salford Royal Hospital ran in the Manchester Half Marathon on 19 May 2019 and raised a phenomenal amount of money for us! We can’t thank the team (Lucy Common, Ivonette Jones, Herwadkar Archana and Shuayb Elkalifa) enough for what they did.
We are excited to be holding our first HAE UK Youngsters only event this year. The day is for 12-24-year-olds and will take place at the Drayton Manor Hotel on 31 August 2019. There will be an educational morning with talks from HAE experts and our Youth Ambassadors, followed by a fun afternoon in Drayton Manor Theme Park.
We are planning our 9th National Patient Day, and it is going to be in the Manchester/North West region, so we hope some of the Marathon team will support us! The date is 23 November 2019 at the Renaissance Hotel, Manchester and our theme for this year is ‘Advocacy and you; your HAE future’. We will focus on the history of HAE, where we are today and how we can all be good advocates to help raise awareness. We will have presentations from some of the UK’s leading HAE experts, and there will be plenty of time to meet and get to know other HAE patients and their family members. As in previous years, we are holding a social event the night before.
The Scottish Patient Day is 2 November 2019 at the DoubleTree Hilton Hotel, Glasgow Central with the theme ‘Managing your future with HAE’. Our Scottish events are always well supported, and we hope this one will be too as we have some wonderful presenters coming to educate us. There will be presentations from our Scottish HAE consultants and specialist nurses and time to socialize and make new friends.
Percy the Pufferfish will soon be coming to a book near you! Our wonderful Young HAE group are developing a patient advice book for youngsters, and he will be amongst those invited to the Youngster Event day we have arranged for 31 August 2019 at Drayton Manor Hotel, Staffordshire. This is aimed at HAE UK members aged between 12 and 25 and our fantastic Youth Ambassadors Jack, Alex and Rhiannon will be our presenters there. They will be fresh from having attended the HAEA Summit in Georgia, USA, and we are looking forward to them telling us all about their experience and training more youth advocates for us.
We are so lucky in having really keen and proactive young people here in the UK; they are a great bunch. Ann Harding, one of our Trustees and a very good supporter and advocate for HAE, has kindly organized a ‘Family Day’ for us at the Railway Inn, West Horndon, Essex on 17 August 2019. There will be bouncy castles, games, a BBQ, ice creams, craft activities and more. This is an event for all of the family, to also raise awareness of HAE.
We are so lucky to have such an involved, and inventive group of people helping us and are always happy to see any of our overseas friends at any event we organize. So if you are going to be in the UK, do contact us and come along to our events!