PATIENTS

A Family Affair: A Mother Shares Her Severe Asthma Story

With Mother's Day around the corner and Asthma and Allergy Awareness month here, Amgen sat down with Andrea Jensen, who lives with severe asthma—as do her three children. Andrea is a Certified Asthma Educator (AE-C) who works in public health and authors the award-winning blog, "My Life as an Asthma Mom." While Andrea has dedicated her career to educating others about asthma, she wasn't diagnosed until she was an adult supporting her children through their own diagnoses.

Read below to hear from Andrea on her unique journey as both a patient and a mother living with severe asthma, how she talks to her family about her condition and advice for others navigating chronic diseases with their families.

Can you tell us a little bit about your diagnosis journey? How did caring for your children with severe asthma impact your own journey?

Andrea: When my middle son was five years old, he was diagnosed with severe asthma after having been admitted to the hospital. I took a deep dive into the world of severe asthma and read everything I could get my hands on, and started thinking, "This sounds like me."

When we went to an asthma specialist so he could take a lung function test, I told the allergist I had similar symptoms that I'd been experiencing my whole life. We set up an appointment and sure enough, I had severe asthma and had no idea. We decided to test all my family members, and it turned out all five of us have allergies, four have severe asthma and two have food allergies. For the last 23 years, our world has really revolved around managing these chronic conditions.

How did you prioritize your own health needs while raising your children with the same condition?

Andrea: That's a tough one, because as moms we're always the martyr. We put ourselves last and we go without things so our children can have them, whether it's food or time for ourselves. The problem for me, since I also have severe asthma, is every time they got sick, I would get sick. As hard as this is as a mom, I would have to make myself ask for help and let people bring me things when I was experiencing flare-ups. I can't take care of my children if I'm not taking care of myself too, and I found people really do have a good heart and want to help when you just ask for what you need.

How did you talk about your severe asthma with your children?

Andrea:  My family is very matter of fact about our chronic conditions. We always talk about how everyone's different, and that managing our severe asthma is something we need to be aware of. It's very important to train your family on what to do if you're having an asthma attack because there may be times when the children would have to help. Speaking from experience, you may get to the point where you can't talk and you're incapacitated, so having these conversations with your family can be very crucial.

Thinking back to when your children were younger and in school, did you have any support managing their severe asthma, especially when your own may have been flaring?

Andrea: I had a fantastic school nurse that had been around for a while, so she knew a lot and was invaluable to me as a parent. I also had a neighbor I could rely on that would watch my children while I rushed to the hospital for either myself or another child.

I recommend finding neighbors, people in the parent-teacher association, or even somebody in your local church—it doesn't have to be family—to make up your support network. I was able to meet other moms who had children with allergies or severe asthma. Being able to find a group of people that you can trust and understand what it's like is key.

Why is it important for children to advocate for themselves about their condition? How did you encourage it?

Andrea: The number one thing was to always have an asthma action plan on file with the school so the teacher and my children would know what to do. It's really hard to get your children to advocate for themselves because it's a lot easier to have "mama bear" come in and take care of them. But I would just tell them over and over again, "I know this is hard and it's part of growing up, but you need to be able to do this for yourself. I'll always be here to back you up, but I'm not always going to be here to do the first step."

What advice do you have for moms that are navigating all of this for the first time?

Andrea: I always tell moms, trust that mom instinct – you know when something's wrong with your child. Also don't take no for an answer. Asthma can change really quickly, and as a mom, you know your children's signs and symptoms.

A vital resource for families with all types of asthma that I wish I would've known about when I was first diagnosed is to look into asthma home visit programs. Someone can either come to your home or do a virtual visit and help you identify potential triggers in your home. They are a great way to get educated about severe asthma in a safe, comfortable place.

For more advice on how to effectively communicate with family and friends about chronic conditions like severe asthma, read this recent article from Amgen featuring another expert. To find a local asthma specialist, visit BreakTheCycle.com.

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