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What do you want to be when you grow up? I bet you’ve asked and answered that question more times than you can count. Did you grow up to be what you wanted? I hope, like me, you became everything you thought you’d never be.

I became a storyteller. I am who I am because of my rare diseases and conditions, and the unpredictability that chronic illness comes with. I am everything I never thought I would be, and it’s all for the better.

Unconventional body

In my youth, (I say this as if I am not in my early 20s), prior to disease completely booting me from the driver’s seat of my life, I wanted to be an art teacher. As the daughter, niece and relative of numerous educators, I wanted to shape young minds. I wanted to be that figure that you think of when you think of your favorite teacher. Go ahead, think of that educator. Yeah, I wanted to be them.

As middle school snuck around, I was plagued with waking up every morning to my throat being swollen shut and my lips double their normal size.

Not a soul could get to the bottom of why this was happening and medications couldn’t even touch the problem.

That wasn’t all, my blood pressure… nearly non-existent; my stomach… ached; my joints… hyperextended; my temperature …dysregulated; my hormones… out of whack; and my heart…. tachycardic or bradycardic.

Every system in my body was out of sorts. The list goes on, but I’ll spare you a lifetime of listening (or reading).

To be honest, I couldn’t write down every symptom or every experience I’ve had even if I wanted to.

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Emma in 2012 after being admitted to Children’s Hospital of Wisconsin. – Photo courtesy of Emma Widmar

Choosing life’s path

I went from a straight-A, All-American-elite-club-volleyball-player, two-instrument musician, and member of every school club and extracurricular activity kind of student, to a frequent flyer at Ascension All Saints’ Emergency Department. Ask the security guard, I should have been given my own parking space there. I’d be lying if I said I wasn’t also on a first-name basis with the South Shore Fire Department as well.

I became everything I thought I never would be: I became disabled.

I missed 50% of my junior year in high school. And senior year? Let’s just say my body had senioritis.

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Emma working on school work in the hospital at the Mayo Clinic. –

I used more EpiPens than I could count during that time because of the unruly bouts of anaphylaxis and angioedema (the swelling of the deeper layers of the skin, caused by a build-up of fluid).

I lost 60 pounds in five months and was fed through a feeding tube in my nose for 14 months, which is now, thankfully, surgically placed in my stomach.

I became a veritable pin-cushion and received more IV fluids than you could imagine. Hospitals have taken so much blood from me; and combined with my anemia, I’m sure I could have starred in a movie as a ghost.

I still wasn’t who I thought I’d be when I’d grow up.

At this point in my life, I was encouraged to drop out of school by a neurologist, because he didn’t see a point in me pursuing an education. He didn’t understand why I’d continue attending school, let alone how I could even do so when I was actively dying and/or trying not to die.

I did it, twice

“Nevertheless, she persisted,” is the phrase that I wrote on my graduation cap. I did it. I came in 10th in my class and I didn’t cut corners. I did the work. From the waiting rooms of the Mayo Clinic, hospital beds in emergency rooms stretched across southeastern Wisconsin, and in between nebulizer treatments, injections, therapies, appointments, infusions, meltdowns, and more. I did it.

I still wasn’t who I thought I would be, but I was pushing on.

Next stop, college. While most kids dreamed of college parties and waking up in college dorms, I just hoped to wake up, breathing.

Continuing on, I often thought about who and what I’d be when I’d grow up.

Onto college

After high school, I became a Redhawk. I never thought I would attend a college located nearly in my backyard. I never thought I would, but I did. And I’m so glad I did. Thank you, Gateway Technical College.

I have vivid memories of selecting my college program. It wasn’t necessarily what I wanted to do, but it was what I could do. It was either the Graphic Communications or the Professional Communications program.

I chose the Professional Communications program because of its flexibility. I chose it because of my disability. Classes were blended. I could go in person when my body allowed.

When my body got the best of me, I completed my work online. Yes, I chose to do online school before it was the “in” thing to do, thanks to COVID-19.

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Emma and her mom (Ann) in the Emergency Department due to COVID-19 complications in July 2022. – Photo courtesy of Emma Widmar

An intern

During my time learning what professional communicators learn how to do, I was an intern at the Racine County Eye (RCE). Landing this role was a collaborative effort between community agencies and disability resources. I have no idea what it’s like to be a “normal” person at a “normal-grown-up-type job,” but the local news world was a whole lot different than being a camp counselor or caregiver.

It was nothing like what I thought I would be when I grew up.

I finished my degree in three years. Sometimes I still struggle with the fact that they say it’s a two-year degree. No, it’s an Associate’s Degree, and three years is pretty good for someone who could barely stand upright in college. “They don’t put a timestamp on your diploma, Emma,” I would tell myself. “Not too shabby for a young, willing mind like mine, with an unruly, less-than-physically-functioning body.”

Joining the team

Throughout my schooling and growing up, my disability never took a break. It took no days off and it forced me to learn to be who I’ve become.

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Emma and Zander at Ascension All Saints in the Emergency Room. – Photo courtesy of Emma Widmar

A week lapsed between the time of my internship ending and when I received the phone call from Denise Lockwood (owner of RCE) asking me if I wanted to continue working for her. How could I say no?

I thought that the next step to growing up was attending a four-year University. That’s the timeline society tells you to follow. Joining the team as a part-time employee at RCE, and then the infamous pandemic, showed that the universe had different plans for me.

I like to say I’m part-time on paper giving my full-time effort. Because for me, as someone who is disabled and collecting Social Security, this is my full-time.

It’s been just over three years and I am still typing away, reporting the local happenings, and even making bi-weekly debuts on TMJ4 News at 4, which my grandma thinks is the best thing to happen since sliced bread.

I’m still not grown up and I think about one thing very often, because you know, at 23 years old, you land one job and you think you’re grown up, right? Did I grow up to be what I thought I would be?

No, I didn’t. And I’m still growing.

My rare diseases and some not-so-rare conditions dictated that path for me.

  • Hereditary Angioedema
  • Mastocytosis/Mast Cell Activation Syndrome
  • Ehlers Danlos Syndrome (EDS)
  • Dysautonomia
  • Postural Orthostatic Tachycardia Syndrome (commonly referred to as POTS)
  • Gastroparesis
  • Inflammatory Bowel Disease
  • Chronic Hypokalemia
  • Neuropathy
  • Asthma
  • Anemia
  • Endometriosis
  • Autoimmune Progesterone Dermatitis
  • Mixed Connective Tissue Disease

All of those diagnoses, plus 77 documented allergies, determined that I was:

  • a listener
  • an advocate
  • a voice
  • an outlet
  • and a storyteller.

My rare diseases taught me about communication. It kick-started my blogging hobby. It engrained the importance of photos, timestamps, and other tools I use every day now as a writer.

I’m not your typical 9-to-5 business professional: pencil skirt-wearing accomplished graduate of some prestigious journalism school.

My dad drives me to my interviews, my service dog sits at my side every time I’m at my computer. My mom’s on standby – every day – helping me navigate the multitude of symptoms I deal with. My sister-in-law serves as my home health nurse and my boyfriend wears many hats helping wherever and whenever it’s needed.

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(Left to right) Brother Max, sister-in-law Holly, Emma, boyfriend Dylan Kleitsch, and parents, Ann and Mark Widmar. Zander, Emma’s service dog, faithfully sits at Emma’s side at Myrtle Beach in October 2022. – Credit: Dylan Kleitsch

My rare diseases have engulfed my life. In doing so, I became everything I never thought I would be. I’m also not the standard image of a journalist, but because of my rare disease, I have a unique lens. In light of my darkness, I found purpose. I found a reason for writing. I became a vessel for others to see things they may not have seen, and in a light that they may not have been able to see before.

“It takes a village” is a quote that runs through my mind every time I make it through a flare. The Racine community stood by my side as rare diseases shaped my life. It’s the community that kept me going, and it continues to do so even now.

Now, I have the honor to be a storyteller in the community, for the community. I have the opportunity to share your stories, because you stood by me as my story was being written. It was this community that empowered me to share my story, and now I get to connect with others to do the same for them.

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Emma and Zander at Ascension All Saints in the Emergency Room. – Photo courtesy of Emma Widmar

For all the things I couldn’t say, outcomes I couldn’t change, and paths that I couldn’t redirect, I became everything I never thought I would be, thanks to my rare disease(s) and Racine. And at the ripe age of 23, I remind readers that it’s never too late to become who you want to be or who you thought you’d never be.

Be rare, be different, be who you never thought you would be.

Emma Widmar

Rare Disease Day resources

To learn more about Rare Disease Day visit Want to know more about these conditions, rare and not rare? Check out:

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