Leah Sirota shares how hereditary angioedema shapes her daily routines and holiday traditions — from managing medication storage and navigating travel challenges to pacing her energy and creating low-stress moments. As the daughter of Dancing with Rare Disease columnist Natalie Sirota, she reflects on the importance of communication and having a supportive family that understands when she needs rest or privacy.
Transcript
My name is Leah Sirota. I live in Loveland, Colorado, and I have hereditary angioedema, which means that I have swells and attacks, generally stemming from physical exertion or other types of medications.
So planning holidays and trips with angioedema can look different from planning trips without angioedema. One of the main things that I take into consideration is medications.
My medications need to be stored in a specific way, and that can make things challenging when traveling, when going through TSA, and on the aircraft and stuff because they have to stay at a certain temperature.
Another thing that’s kind of difficult is managing your stress levels and your energy levels. For me, I get really tired really easily, and getting overly tired can trigger an attack, so I have to plan my timing very carefully so that I always have enough time to be able to rest and recuperate in between activities.
I balance my energy levels by making sure that I always have enough time to be able to lay down, to be able to be in kind of a stress-free environment. For me personally, it’s kind of being in a dark room with limited stimulation. Also, being sure that I have enough time to be able to take any medications that I need in a secure and private location. Also, being able to just breathe.
There’s always holiday traditions in every family. For my family, we celebrate Hanukkah, and so we like to make latkes. And we also like to light the candles of the menorah. Also, one thing that our family does that’s really fun is we like to do a gingerbread-house making contest. There’s no winner or anything, but it’s all in good fun, you know, just spending time creating gingerbread houses, eating lots of candy, all that kind of stuff.
I always make sure that I pace myself when it comes to celebrating holidays with my family. I always make sure that I have a place to go if I need to lay down. Also, if I need to go take my medications, I always have a private location that I can do that.
I’m very blessed and lucky that I have a family that understands if I need to go and take some time to myself. Also, with my mom also having some health issues, we both kind of like coordinate together. That way we’re all on the same page.
I think the key to enjoying a holiday season when you have hereditary angioedema or any other chronic health issues is to pace yourself. You know, make sure you have lots of time to be able to rest, to be able to breathe, but also to not think about it too much, to be able to just sit there and enjoy yourself, be in the moment.
