Natalie Sirota shares her journey of living with hereditary angioedema (HAE) while raising three children who also have the condition. She reflects on the challenges of caregiving with a rare disease, the importance of building support systems, and how giving herself grace has helped her family grow stronger together.
Transcript
Hi, I’m Natalie Sirota. I live in Colorado, and I have hereditary angioedema. I also have three children who have angioedema.
So parenting with rare disease can be a challenge. My daughter that was initially diagnosed is adopted. So it was very interesting that I ended up being diagnosed with hereditary angioedema as well as her having hereditary angioedema.
Over time and educating myself with her rare diseases, I learned more about my own health issues and was able to talk to our immunologist about my condition and see if maybe I needed testing for this as well.
My daily life in parenting with my own rare disease, as well as my children’s rare disease, can sometimes be challenging.
It’s understood that, you know, we’re supposed to put our own oxygen mask on before we take care of our children, although that, you know, goes against the parenting gene, I think, in our bodies, that we want to help our children first.
But fortunately, as my children have matured and are now taking care of managing as adults with their own rare disease, it’s more of a symbiotic relationship now, and we actually are each other’s support systems.
She’ll say, “Hey mom, did you take your meds yet? You know, it’s time for your meds.” And I’ll remind her, and we check in on each other about symptoms and how our day’s going, you know? Do we need rescue medication? Do we need to take a break and rest and such? So it’s really developed into a great, supportive relationship.
The advice that I would give to other parents in the community, that whether you have angioedema or are a caregiver, allow yourself a whole lot of grace. We’re going to fail. We’re going to miss symptoms, we’re gonna not get there as quick sometimes, or have the rescue med ready as fast as we want it to be. And it’s OK.
We have support systems. We have our online communities that can support us.
Please make sure that you have mental, physical, spiritual support systems in your life, whether it’s actual family or community that you develop that you can talk with, that can encourage you and remind you to breathe and take care of yourself. Because caregiving is a full-time job.
And if you’re also a parent who has a rare disease, whether it’s the same one that your children have or maybe something else, or even just life challenges that you’re dealing with, you really have to give yourself time to take care of yourself. Take care of your patient and just know that there’s a greater community out there to support you. You’re not alone in this.