Natalie and Leah Sirota share how hereditary angioedema (HAE) shaped their diagnoses, deepened their bond, and strengthened their advocacy as a family living with HAE. Read Natalie’s column, Dancing with Rare Disease.
Transcript
Natalie: Hi, I’m Natalie Sirota.
Leah: Hi. My name is Leah Sirota.
Natalie: So, as a mom who has angioedema as well as three children with different forms of angioedema, it’s very interesting.
When Leah was first diagnosed, I was like, “How can this be angioedema?” I thought angioedema was an allergic reaction because that’s what my biological daughter had. And as we learned the complexities of hereditary angioedema with Leah, it actually helped me explore my own diagnosis.
Because while we have different forms and different manifestations of symptoms, it was still, oh my gosh, I’m getting these random swells. Could it possibly be something similar?
So I started exploring it with our immunologist, and he confirmed it. And then when my son started having random swelling, his is external. Leah’s and mine are both internal swellings, and so when my son started having these external asymmetrical swells, I was like, “oh my gosh, since I have angioedema, could he also have angioedema?”
And so thanks to Leah, the rest of our family got diagnosed.
Leah: HAE does definitely affect my relationship with my mom. I think that we’re actually closer because of it, because we understand each other’s struggles, and we kind of help keep each other accountable when it comes to making sure we take our medications and don’t eat food we shouldn’t, and we don’t push ourselves too much.
Just like any mother-daughter duo, we sometimes disagree on certain things. We also have our different personalities and our different likes and dislikes. I prefer watching medical shows, and my mom absolutely does not like watching medical shows.
Natalie: Well, we are very similar and we both live with HAE. We have our own special interests. We’re definitely from different generations.
HAE is something that brings us together and gives us a commonality, and, as well as compassion for each other, we support each other and are also great caregivers for each other because there are times when I’m having a flare and she needs to step up to the plate and vice versa. I think it’s a good symbiotic relationship.
Leah: I guess if I can add one more thing. The way that we approach our HAE is also different. We’re different in the ways that we take our medications. You know, I take my meds maybe a little bit differently at a different time than my mom does, and maybe I’m a little more aggressive in certain occasions, and maybe she’s a little more aggressive in certain occasions when it comes to our treatment plans.
For me, I think the best advice that I can do is to listen to your body. Take things at your own pace. You are in charge of your own treatment plan, and your doctors and nurses and healthcare team are part of your team. They’re supposed to work with you. And so taking charge of your own health and listening to yourself is really the best advice I can give anybody, especially with HAE.
Natalie: And that goes for families as well. And having Leah being diagnosed at a younger age when I was still, you know, the parent in charge, it has been interesting to turn that over to her, to let her own her diagnosis and treatment plans. And it was difficult at first to let go of that.
But now I think that we’ve gotten to a place that we are each other’s support system and can, can very much advocate for the other one if it is an occasion that calls for it, but also allow each other space if we need that.
And so we typically have gotten to a point these days of saying, “Do you need anything? Is there anything that I can do for you?” And being respectful of whatever the answer might be.
