KAYLA MACK
This Spotlight appeared in our January 2024 newsletter.
Where do you live? What are your favorite and least favorite parts about it?
After being gone for 20 years, we recently moved back to Kansas City, where I grew up. It has been wonderful to be back in a familiar place with nearby family and friends. My favorite thing about Kansas City is the cultur. We have an amazing Symphony, Ballet and Opera and Art Museum. My husband and I are living downtown which has been a lifelong dream of mine. I love being able to walk in any direction to find small businesses, delicious food, and coffee shops where I can write. My least favorite thing about Kansas City is probably the suburban spread of it. The area where I grew up is now two to three times the size it was and all new construction. I prefer to frequent the more historical areas.
What do you do for work?
I have not yet gotten back into the work force following our move. My most recent job, however, was in the Emergency Room on the registration team. I was able to react with a lot of compassion and empathy to the patients and their families from my own experiences in the ER. Also, seeing blood did not phase me in the least!
What do you do for fun?
The older I get, the more fun I’m having. My 50s have been magical. I began them by attending Mermaid Camp. During Covid I began fostering Monarch Butterflies (egg to butterfly) and have released more than 300 butterflies into the world. I’m an avid writer (or have imagined myself as one anyway) and hope to write a memoir in the next year or two.
Severe Type 3 VWD has never stopped me from doing the things I enjoy. Instead of saying “I can’t do that” I find a way around. I couldn’t run a marathon like my friends were doing (for instance) so I found a vertical stair climb to compete in instead. Instead of ballet classes I am taking aerial dance (hoop, sling, etc.) that leave my ankles out of things entirely!
How and when did you get connected with VWD Connect?
I am quite new to VWD Connect! My journey has been unusual in that I have been isolated in it for much of my life. Two years ago I had a bleed that was a wake up call for me. I realized had been dealing with my VWD on a reactionary basis and needed to become proactive about it instead. I began researching what resources were available online and through that found the Foundation.
What has being a Foundation member meant to you?
Meeting others like myself (with severe VWD) has been a life changing experience for me. I found out I wasn’t alone after all! I’ve also learned so much. It feels so much better, being proactive. I am no longer just waiting for the next bleed to happen. I am taking the steps to prevent them. I have gained the knowledge to have informed discussions with my care team and this has made a huge difference.
Do you have any favorite Conference or other Foundation event memories to share?
I have absolutely loved the evening activities we’ve had at Conferences. Karaoke, trivia, bingo, dancing have been amazingly fun and wonderful. It’s a chance to sit back, relax and share some laughs. I have enjoyed the opportunity to get to know people better.
Any News Year’s traditions or resolutions?
My husband and I received a set of toasting glasses as a wedding present and we get these out on NYE to toast the New Year with. Like many others, on New Year’s Day we make black eyed peas for good luck. A few years ago I started choosing a “word of the year” vs. making resolutions. The word I have chosen for 2024 is “SHINE” – and I plan to!