By Morag Faulds
We all know how difficult it can be to get the right emergency treatment and medical advice for HAE, even in our own country. Being so rare, most doctors and nurses do not even know HAE exists, let alone know how to treat it. This is why our global HAE community is so important. Staying connected online and at international conferences gives us the opportunity to share experiences, advice and support each other through it all.
A particular challenge for people with HAE is travelling. Being away from our family, friends and our local HAE doctor – as well as potential differences in language – means that we might not be able to easily and promptly access the support we need if there is an emergency relating to HAE. I recently realized just how important and life-saving our global HAE family can be.
While on holiday in Italy this year, I suddenly had a severe abdominal attack that developed extremely quickly. I am on prophylactic treatment, so this was unexpected, and most likely triggered by the stress of travelling and being very active, every day. I had no emergency medication, and after a few hours, the pain was unbearable and had caused fainting and vomiting. I contacted hospitals in the area but as a tourist and foreigner no-one wanted to treat me, and they did not know what HAE was. By this time, I couldn’t walk or speak much. I was doing my best to try and manage the pain as well as try and find medication nearby – but with no success. My sister, who was at home in South Africa, knew what was happening to me and posted to the HAE International social media platforms: were there any Italian HAE patients who could help? Within minutes we were in contact with fellow HAE patients nearby. These Italian HAE patients contacted their own HAE doctor at a hospital in Milan and alerted them to my emergency situation. I was able to get to the hospital and meet the HAE doctor. Thanks to the HAE patients contacting their doctor, he was ready when I arrived, and I received emergency treatment straight away.
Without the global community, I wouldn’t have been able to get the care I needed in this emergency, and my attack would have progressed to much worse.
I would like to say a very special thank you to Marco Roffia and Martina Perera, two amazing HAE friends who jumped to help as much as they could. You went above and beyond to make sure that I got the help I needed in time. You are all amazing, and I appreciate it so much!
Let’s keep supporting each other worldwide and never be shy to reach out when you need help; we are in this together!
HAE International is delighted that our global community were able to help Morag so quickly when she experienced an HAE attack when travelling. Please do talk to your HAE doctor before travelling and ensure to bring enough emergency/acute medication with you to cover you in case of an attack. To help our community prepare for travel within your country or to another country, HAE International has developed these free resources:
The HAE Companion app: Download from App Store og Google Play – it’s free of charge!
App Store >> https://apps.apple.com/us/app/hae-companion/id1515980065
Google Play >> https://play.google.com/store/apps/details?id=com.a84071d6d799.app
The HAE International Emergency Cards: Download either directly from the HAE Companion app or from https://haei.org/resources/emergency-cards
Before travelling abroad: It is always a very good idea to familiarize yourself with HAE knowledgeable hospitals and physicians in the country or countries you are going to visit. Please use the HAE Companion app or the HAE International world map with an updated overview of ACARE centers, hospitals and physicians around the globe: https://haei.org/about-haei/globally.