Growing Up with EGIDs with Kayla Abramowitz

Real Talk: Eosinophilic Diseases

Growing up with an eosinophilic gastrointestinal disorder (EGID) can be a challenge. In this episode, host Ryan Piansky, and guest host Mary Jo Strobel, talk to 19-year-old Kayla Abramowitz to discuss her journey living with eosinophilic colitis. Kayla Abramowitz started having symptoms of an EGID at the age of six but was not diagnosed until many years later. Today, she is a sophomore in college majoring in Public Advocacy at the University of Miami. She is also the Founder, Chief Kid Officer, and Vice Chairperson of the non-profit “Kayla Cares 4 Kids.” Kayla founded the organization at age 11. Motivated by her own experience with hospital stays due to chronic illness, she collected entertainment and educational items to donate to children’s hospitals. Kayla has received recognition and awards for her work from various organizations.

In this episode, Kayla shares her journey as a child growing up with multiple medical conditions, including eosinophilic colitis, and how she navigates the challenges of living with chronic diseases. She explains her diagnostic journey, how important community support was and continues to be for her, and what inspired her charity work. Tune in to listen to Kayla’s inspiring story and learn more about her motivation to make life better for other children with chronic disease.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[1:10] Mary Jo introduces the guest for this episode, Kayla Abramowitz.

[2:06] Kayla shares her background about her journey with an EGID.

[3:28] How did Kayla juggle school responsibilities alongside going to doctors’ appointments and trying to get a diagnosis for her condition?

[4:33] What are some common misconceptions that people might have about eosinophilic colitis?

[5:38] Kayla has a sibling with an eosinophilic disorder as well. What has that been like?

[6:56] Kayla’s brother’s diagnosis helped guide her toward exploring eosinophilic disease as a possibility to explain her condition.

[7:30] Kayla shares how she and her brother were able to help each other in their journey living with eosinophilic disorders.

[10:10] Kayla explains what some of the day-to-day management of her condition looks like and how she’s trying to manage it in different ways.

[12:10] How did Kayla initially get connected with the APFED community?

[14:37] How is Kayla’s chronic disorder impacting her time at college and her ability to participate in social events?

[16:43] How much did Kayla have to prepare to go away to college?

[18:09] Kayla shares more about her college experience and how studying public advocacy is helping her speak up about topics that are important to her.

[18:31] How does Kayla explain her condition to new friends at college?

[20:40] Kayla’s experiences with her chronic health condition inspired her to establish Kayla Cares for Kids. She explains more about this nonprofit that she started.

[23:37] What are some of the donations that Kayla's nonprofit receives and distributes?

[26:05] What are some preparations that Kayla makes to travel?

[26:56] Kayla talks about some of the recognition she has received for the work that she does.

[28:13] Find out more about Kayla and the work she does via her website or reach out to her via email.

[29:36] Kayla shares some advice for kids growing up with chronic illness.

Mentioned in This Episode:

American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Kayla Abramowitz, Kayla Cares 4 Kids

Email Kayla

Kayla Cares 4 Kids on YouTube

EOS Connections Online Community

This episode is brought to you thanks to the support of our Education Partners Abbott, Bristol Myers Squibb, GlaxoSmithKline, and Mead Johnson Nutrition.

Tweetables:

“It’s really hard to explain that I’m not feeling well even though I look fine.” — Kayla

“It made me realize how lonely he was feeling and how much support you can get by going to a conference like that.” — Kayla

“Community is so important.” — Mary Jo

“It’s do or don’t with this medical issue and I have to really evaluate everything on a daily basis.” — Kayla