Guest Voice: In my big family, I’m not alone with HAE
When four family members have different types of the same rare disease
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Managing hereditary angioedema (HAE) is complicated. Navigating family dynamics is also complicated. But managing family dynamics alongside HAE is incredibly complicated.
Let’s start from the beginning. I am the youngest of eight children. My parents, Natalie and Daryl Sirota, adopted me from Ukraine when I was a toddler in 2004. Being thrown into a large and chaotic family was already enough for a young me to go crazy, but that was just the beginning of my story.
I became ill in 2015 with an assortment of seemingly random symptoms that just kept getting worse. It felt like there was no answer in sight — that is, until I was diagnosed with HAE in 2019. It was quite the journey to get to that diagnosis, but alas, here I am.
Angioedema, like any other chronic illness, can be difficult to deal with, and sometimes it can interfere with family functions. It can be frustrating when I have to say no to certain things or events because of HAE.
For example, we love dining out together, but sometimes the choice of restaurant means I can’t eat there due to possible HAE triggers. I feel like I’m throwing a wrench in the works when I disagree with the decision everyone else has made. My parents understand my dilemma, but I worry that others won’t.
‘Accountability buddies’
Every family has their quirks. Some have special traditions, others have a lot of kids, and some have shared trauma. My family has all of the above. I’m not the only one who deals with angioedema in our family: I have type 2 hereditary angioedema, my mother has type 3, one of my brothers has type 1, and one of my sisters has acute allergic angioedema.
It’s definitely interesting to have four family members with different types of the same rare disease. We all have our own experiences and triggers. No two individuals will have the same triggers or responses, even with the same diagnosis.
As the only person who was adopted in my family, I’ve always felt like I’ve been a little “off.” I will say that knowing that I’m not the only one in my family who has this condition does make me feel less alone. Community is especially important for people with chronic illnesses. It can be very isolating to be sick for so long, and having a sense of place and understanding can shed light on that dark spot in my life.
I was the first person in my family to be diagnosed with HAE. When my mom was diagnosed, we started to bond a lot more. Having a similar challenge in our lives brought us closer together, which was really special.
We consider each other “accountability buddies.” We help each other avoid our triggers and offer reminders to take our medications. My mother and I are both very stubborn about taking rescue meds, so a little nudge goes a long way.
Once my brother was diagnosed, he joined the accountability buddies club as well. Thankfully, not all of my siblings have a chronic illness to manage; however, the ones that do have a type of understanding that the others can’t.
With a large family, managing my HAE while also finding ways to spend time with them can be stressful. I always ensure that I have my rescue medications on hand before, during, and after big family events; keep tabs on how I’m feeling in the moment; and give myself the time and space needed to fully enjoy the time together.
I have the rare — but not unfortunate — scenario of having multiple family members with angioedema. Still, regardless of whether you’re living with HAE in a family of one or a family of 10 like mine, I want you to know that you can always count on Bionews, the publisher of this website, to be there for you.
To submit your own Guest Voice for publication on Angioedema News, please email your idea to our columns manager at [email protected] with the following included in the subject line: “Guest Voice: Angioedema News.”
Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
