McKayla’s Story - w. Hereditary Angioedema

Hello!

“My name is McKayla, I am a 36 year old mother of 2. I have been living with HAE for 20 years but only diagnosed for about 8 years.”

My HAE Diagnosis

“I was diagnosed in the ER when my throat and tongue swelled. There happened to be a traveling doctor there who had heard of HAE. He offered me treatment specific to HAE. Within 10 minutes I could feel relief. This was a life changing moment.”

Growing up with HAE

“I remember minor attacks in my late teenage years. Severe attacks started in my late 20s and got progressively worse until I was finally approved for HAE medication. After 8 months my attacks were less severe and much less frequent.”

What is HAE?

HAE is a rare genetic disorder affecting a key protein (C1-inhibitor) that regulates inflammation. This triggers sudden, severe swelling episodes in the face, airways, hands, or digestive tract, causing intense pain and potentially life-threatening breathing complications without prompt treatment.

My Fears with HAE

“My biggest concern for myself is experiencing a life threatening attack, I do my best to pack medication with me and treat at the very first sign of an attack. My ultimate fear is my children having to endure this condition, I'm doing everything I can to make it easier for them if they end up also having HAE.”

Breaking the Stigma

“The only stigmas I've encountered are people thinking I'm limited on what I can do out of concern for triggering an attack, when in reality I push myself out of my comfort zone all the time to test the limits of what I can do.”

Challenges I’ve Faced

“I think one of the biggest challenges for me to overcome was learning how to rest when my body said it was time. I've always been a go go go kind of person and with HAE sometimes the only thing you can do for yourself is rest.”

Feeling my best with HAE

“For the most part I just stay current with my medications, other things that I have found to help me are things like going to the gym, eating healthy and staying away from situations that I know will stress me out.”

A Typical Day w. HAE

“The interesting thing about this condition is that most days I'm totally fine and “Normal” but on attack days everything is unknown. You don't know when it's going to happen or how bad it's going to get. So a typical day is living like you won't have an attack while also being prepared for one to come on at any time.”

Finding my Purpose

“A few years ago I started competitive body building and have since then competed in 2 bikini competitions. This has helped me tremendously from being a huge stress reliever, to growing my support system, to the health of my vascular system making it easier to start my IV’s.”

Building my HAE Community

“The majority of my support comes from my friends and family, but I’ve also found pages through Facebook where I’ve met some incredible people living their lives to the fullest regardless of this potentially life threatening condition.”