Last Saturday my wife and I attended a patients day for hereditary angioedema sufferers. It was hosted by HAEUK at a hotel in Bristol. I though I’d post a short report for other patients who I know sometimes read this blog.
The day was attended by around 100 – 120 people, many of whom were patients or family members, as well as doctors and other representatives of the medical profession.
A number of presentations were featured throughout the day. These included Dr Tariq El Shanawany speaking about new developments in HAE, Dr Mark Gompels speaking about sport and the HAE patient, Henrik Boysen speaking about HAEi (international) and Dr Scott Hackett speaking about HAE in the family.
We saw a short film that has been produced, in which several patients (myself included) were interviewed about their experiences with peripheral attacks.
Two patients told stories about their case history and how they had overcome many of the difficulties that the condition presented them with. Paul Carrol, told us about how he had started to run for fun a few years ago and is now a marathon runner and a triathlete and Dana Shapiro spoke about her recent trip to Kilimanjaro.
The afternoon saw is breaking up into small groups to meet each other and discuss our experiences, and Alex Graham (HAEUK’s youth ambassador) told us about some of the achievements of young patients.
It was a very successful and informative day, I met many old friends and some new ones. We came away, as always from an event like this, encouraged and refreshed.
If you’re just reading this and wondering what HAE is, you can read my case story here.
Well done to all the guys at HAEUK for a great event.