The first HAEi Youngsters Camp was held in Frankfurt in early August.

Most of the youngsters hadn’t met each other before, and they didn’t need much encouragement in connecting and making lifelong friendships with one another.

Here is some feedback from the Australasians who took part:

The trip was one of the most amazing things that I’ve ever experienced with HAE. I was able to meet some lifelong friends and some people that I could share my experiences with. It is also given me the ability to extend my HAE family past the borders of Australia and into the rest of the world. 

I felt like I was a 12-year-old again, going to a school camp, but this time I didn’t have to explain anything or worry about my illness. We had pillow fights, mucked around, stayed up late, and even tried out the sauna. I was even able to do some things that I have never been able to experience at a camp before, like mum letting me go off with my friends whenever and wherever I liked. Afterall,  if I had any problems, my new friends would know what to do. I felt normal! 

What an amazing experience, being in a foreign country that I frankly thought I would never get to do. We even had extracurricular activities such as going into the city for some sightseeing. We went for a little walk through a forest beside the conferencecentre. Coming from Australia I’ve only ever seen the rainforest, so seeing this type of forest for the first time was amazing. 

But let’s not forget my new friends. These three people combined with me to join what we like to call “The Fantastic Four”. The members of this group include me from Australia, Facu from Argentina, Manja from Germany, and Tom from Israel. It’s amazing to know that I have friends who I will be able to just instantly message and know that they will understand what I am going through. 

I don’t think I can ever thank HAEI organisation enough for helping to fund me in order to get to this kids camp and I hope that they have more of these in the coming years so I can keep in contact with my extended HAE family.  
Jess, Brisbane
I’m so glad I went to the HAE Youngsters Camp, it allowed me to form many great connections with patients my own age from all around the world – 25 different countries to be exact! 

It was a completely new experience and a huge relief to be able to openly discuss what it’s like living with HAE with a group of peers who fully understand. We were able to come together to share and compare stories, give advice, and support one another but also think critically about what we can do as a group to continue to improve the lives of HAE patients.

It’s great to still be connected with the HAE Youngsters on Facebook so we can stay in touch!
Rosie, Auckland

Life with HAE has been really tough for me, particularly since I turned 10. I’ve had loads of swelling attacks requiring numerous hospital admissions. Finally, we got prophylactic berinert at home. It definitely made things easier for me but not as good as I hoped.

I was excited to travel overseas for the first time. I didn’t know what to expect but the camp was so much fun. It gave me time to talk to other kids my age who have been through very similar experiences. They’ve all been on the same treatments as me and some are still coping without prophylactic treatment. They are still living through it. They inspired me. I listened to their stories and I thought “if they can do it, so can I”

I’m so glad I was given this opportunity. It has refocused me to concentrate on my successes.  And it was fun!
Ryan, Brisbane

The first youngsters camp was sooo worth the effort of our 28hr journey there. For the first time, I was able to relax and enjoy the journey with the knowledge that if one of us had an attack in transit, no worries, just whip out the berinert and we can treat it on the spot. No need to plan ahead to find out where the local hospitals are – this trip we only needed to research the tourist spots.

From the moment we stepped into the lobby we saw welcoming faces. It was the first time Jess met others the same age as her with HAE. And on the first day, she met DOZENS of HAE family her age. They didn’t need much encouragement to connect both in person and in the electronic space. 

There weren’t as many younger kids Ryan’s age and they took a bit longer to feel comfortable sharing with each other. It was during the sessions with the two specialist doctors that they discovered how similar their stories were and they realized how much they could learn from each other’s experiences.

The youngsters laughed and learned together. They shared stories of joy and comforted each other with understanding when they shared their stories of joy and pain. 

I’m so proud to have been able to witness these amazing youngsters thriving while living with HAE.
Tania (mum to Jess and Ryan), Brisbane

The next opportunity for HAE youngsters to meet is in Vienna, Austria at the HAEi Global Conference from May 17-20th 2018.

In the meantime, click on the photo below to see more of what the youngsters did at the camp.