My trip to Washington DC – Rachel’s story

I don’t let having HAE stop me from travelling, it does make things slightly more difficult, but with the right planning it is definitely possible.

In May 2014 I travelled to America with my husband and our 11 month old daughter, which in itself was a challenge, let alone also having HAE and the worry of having a bad attack whilst travelling away from home.

For this particular trip I spoke to my consultant a few months before I planned to leave the UK so he could help me prepare. He wrote a letter explaining about HAE and that I needed to carry my C1-INH medication on the plane with me, in my hand luggage. The letter also contained his contact details in case there was an emergency whilst I was on holiday. He made sure I had plenty of C1-INH to last for the holiday, as well as some extra just in case. I then arranged travel insurance for the three of us, which was a little more expensive due to me having HAE, but essential, I would never risk travelling without it.

Before we left the UK I also looked into which hospitals were close to where we were staying so I knew exactly where I needed to go for treatment if necessary. I am lucky that I am able to self treat so I rarely need to go to hospital for my C1-INH, but you never know when the unexpected bad attack may mean you need to.

On arrival at the airport we checked in and I explained I was carrying medication in a cool bag in my hand luggage, which included needles. The flight to America was seven and a half hours which, with a toddler, was quite busy, but thankfully I didn’t have any problems with my HAE and we arrived safely.

The holiday itself was fantastic, we visited lots of sites in Washington and New York, walking miles, but
I didn’t suffer any severe attacks. I did have to administer C1-INH twice throughout the trip when I suffered swollen feet and abdominal swells, but this didn’t stop us from climbing the Rockerfellar centre, walking around Central Park and going on a helicopter ride over Manhatten, things I didn’t think I’d ever get the opportunity to do. Although C1-INH no longer needs to be kept in the fridge, it cannot be allowed to get warm, so I did keep mine in a cool bag or fridge as much as possible for the duration of the trip.

We had a fantastic holiday and having my medication close to hand meant I felt confident I was in control, was able to treat as soon as I felt an attack coming on, and could just get on with enjoying the rest of the holiday with my family.