Danita LaShelle, an HAE advocate and caregiver to her daughter, who she calls Ladybug, shares what it takes to travel safely with hereditary angioedema — from medication planning to navigating airports and unexpected moments along the way. Read more from her in her column: From the Caregiver’s HAErt.
Transcript
Hi, everybody. I’m Danita LaShelle, and I am an HAE advocate and a caregiver for my beautiful daughter who’s been living with HAE.
When it comes to traveling with a person that has HAE, there are so many things that we have to think about that others don’t have to think about. I have to think about how long it’s going to take us to get there.
Of course, when we pack the medicine bag, it has to be packed with frozen gels in order to ensure that the medicine stays cold. And I have to make sure that the time it takes for us to get from our home to the destination is going to make sure that those gels are going to stay cold to keep the medicine at a certain temperature.
I also have to make sure that they have to stay frozen, because we have to get the medication and those gels through TSA. We have to book our hotel to ensure that there is a refrigerator in the room so that once we arrive at our destination, we have to pack the medication in the refrigerator to stay cold, as well as places to refreeze the gels so we can get back in the car or back on the plane and return home.
When we are preparing for a big trip, there are two separate lists. There’s the regular packing list, of course, for the family, of all the things that we need and all the clothes that we need to take.
But of course, we have our HAE list, and that includes all of the accessories and necessities our daughter needs in case she has a flare, or if we’re traveling on the weekends that she’s taking her preventative medicines as well.
We also have to call ahead to make sure that the hospitals there are equipped with emergency medications, in case we have to take her in, which is one of the things that I love, that the Hereditary Angioedema Association actually helps to do that for us, as well as the specialty pharmacy, which actually advocates for us as well. So that’s something that we can take off of our list.
We have to make sure that we are aware and that her doctors are aware that she’s traveling. And we want to make sure that the places that we are traveling does have accessible healthcare, or we know where to go if we’re traveling out of the country, what we need to do in case we run into any issues where a flare may occur, or she may have to go to the hospital, who we speak with and who our liaison is so that she’s well taken care of.
One of my favorite travel stories. It was actually the first time Ladybug and I ever traveled out of the country. I was very, very nervous because I had all of this medication. We had all of these needles. I had all of these frozen gel packs in the bag. And I was absolutely certain that we were not going to make it through customs with all of this stuff.
And we did make it through, going into the country. But coming out, of course, we had to go through customs again. And I, you know, gingerly put the bag on the conveyor belt with the hopes that we were going to make it back through.
And, of course, Ladybug put her bag behind the medicine bag, and they sent it through the X-ray machine, and everything comes to a screeching halt. And then all of a sudden I hear all of these people kind of yelling, you know, in a different language that was obvious. They were calling attention to what was in the X-ray machine.
And I thought to myself, well, this is it. This is where everything falls apart. This is where we didn’t plan well. This is where I should have gotten more information. And they bring, they are dragging our bags back to this table, and they’re going to search it.
And I realize that they’re not dragging the medicine bag, but they’re dragging my daughter’s backpack. And she didn’t realize that the four full water bottles that she had in there were not allowed to go through TSA.
It is something that I laugh about now, that the one bag that I was worried about was the bag that actually made it, but the person that needed to get her regular backpack through almost did not make it.
And so, it’s neat little things like there that kind of make travel a little less stressful, that we know that even in the times where we’re traveling with all this stuff, I still have a neat kid making kid mistakes.
My best advice for caregivers or angioedema survivors is to travel. You are not bound by this very rare disease to have to stay at home. There are ways that we can enjoy the world, that you can take your person that you are caregiving for to all of the places they wanted to go.
You just have to ensure that there is a plan in place so that you can enjoy where you’re going, have fun when you’re there, and then have safe travels back home.
