With a rare immunodeficiency disease, a performer and patient advocate learned lessons the hard way

When asked where he’s from, Casey Warford often waffles. He was born in San Antonio, but raised in Georgia, and then moved back to Texas for college. It’s a little complicated because all that time Warford was dealing with a complex medical condition.

The oldest of three children and a couple of close cousins, Warford was a quiet, sleepy baby. But he couldn’t keep his food down, and he’d run fevers and suffer frequent infections. Around four months, he was diagnosed with chronic granulomatous disease, an inherited immune deficiency that made Warford highly vulnerable to fungal and bacterial infections. 

To get treatment at Emory’s Egleston hospital, Warford moved in with his grandparents in Atlanta. That’s where he spent his childhood, and where he figured out how to navigate the world with CGD. 

Warford, 28, spoke with STAT over Zoom from his home in Katy, Texas. This interview has been edited for brevity and clarity. 

When you were a kid, how would you explain your condition to people?

I’d straight-up tell them I have a low immune system. The first thing I got was the generic, “Do you have HIV?” All that fun stuff. And I would just say, “No, all that means is my immune system just doesn’t work like yours does. I can’t fight off bacteria and germs like you can.” And they would kind of get that. Some would ask for a further explanation. And that’s when I would get a little more detailed and be like, you know, you can go swim in a lake; I can’t. You can mow the lawn; I can’t. And I didn’t even take the questions they would ask as harmful because they’re kids, they’re going to ask whatever pops into their heads. 

Mowing the lawn is interesting. I wouldn’t have expected that to be an issue. Is that because of the allergens from the grass? 

Yes, exactly. CGD patients can’t do standing water, lawns, hay. There is the story of the time I went to the rodeo, and we tried to make a middle ground. We knew I couldn’t be around hay, so we didn’t go to the actual rodeo portion. Here in Texas, there’s a rodeo portion and then there’s the fair portion. We went to the fair, but of course, it’s Texas, so there’s still rodeo stuff around. So I put a bandanna on and all that fun stuff. I still contracted aspergillus in my lungs after that. So those are the things we can’t be around simply because of the allergens and the fact they can sneak their way into our system. 

You went to a public arts high school. What art form did you specialize in?

I started off as a drama major, and my minor was communication arts. I did the whole musical-play thing and had fun with that. Even navigating that with my CGD, it was fairly simple. I would leave rehearsals, take my medication as soon as I could, and by the next day be set for another day of school and then rehearsal. If I felt a little off, you know, I moved at my own pace. 

How did you go from being a shy kid to being on stage performing? 

That was where I was able to be myself. I’ve always loved movies — “Spider-Man” and things like that. I think it was fourth grade that I actually started. My mom pushed me to go out and we were doing “The Wiz” at my public school. I started with that. It came natural to me just being on stage, you know, that was where I wasn’t Casey, the CGD patient. I didn’t have to think about doctors’ appointments or taking medication. I got to be someone else for that hour and a half. That was kind of my escape from having to be that patient.

I want to talk a little bit about the summer camp incident, if you’re OK with that.

Oh, yeah. That’s the big incident. It was an asthma camp, funny enough. And I will forever be a little confused as to why we had horses and stuff. It was all kids that had asthma. I had actually done it my junior and senior year of high school and my freshman year of college. I said, “I want to go back.”

I did my thing as a counselor. And so it came time for lake day. Now, I, of course, know I can’t go into the lake. But I have kayaked or canoed and there have been no issues. Well, in this particular instance, one of my kid’s kayaks flips. They can swim, of course, but as a counselor your instinct is to go after them just in case, because they’re small. And so without thinking, I didn’t go head first, but I did get in — I didn’t think anything of it — and got them out. Everything was cool. 

And I finished here without any issues. And then I went and I stayed with my aunt in Georgia and I did have a headache while I was there, but I didn’t think anything of it. And then sophomore year of college starts and I had joined the video program for our football team and we would film practices. And the headaches, they would come during the practices or they would come when I would be out around the city with my girlfriend at the time, they would come in the middle of class. I put them off. I would make up excuses, and it got worse and worse. At a certain point, I knew something was off. 

In the back of your mind, were you thinking maybe it was the lake? 

I just didn’t think of it because I had never had any issues with it before. And then the nosebleeds start. These were just me sitting, watching TV, nosebleeds. And that’s when my mom would say something’s wrong, that’s not normal. But I would go back to college. And if a nosebleed happened, I would deal with it, put it away, if headaches happened, deal with it, put it away. But around January, it got to the point where I could hardly walk. 

How long were you ignoring those issues? Four months?

Way more than four. It was basically from that July to January 2015. When it hit the fan, my parents had actually come to campus and we had lunch. And during that lunch I got a very bad headache, but I was so used to hiding them at that point and just hid it. I hadn’t been taking my medications at all, so that was also a thing I knew was an issue.

They came for lunch. They left. I went and took a nap before a class and I woke up just drenched in sweat, very dizzy, I was nauseous. I knew something was wrong. My girlfriend at the time took me to the ER. I filled out the name, birthdate, all that basic information. And when I tell you, that’s the only thing I can remember…I went into a coma for three days. They found out that a fungus had attached itself to my brain. And we still, to this day, will never know what specifically caused it. 

That must have been terrifying for her and for your family. 

I didn’t see them until three days later, laying in a hospital bed with a tube down my throat and a swollen head because — I found out — they had to go in and do what’s called a craniotomy, (take a portion of skull bone off to let your brain breathe and shrink back to size).

They put a mirror in front of my face and I broke down and —  I like to say it was because of how I looked. But in reality, I know I broke down because that’s when it hit — what had happened. I was bald with a scar running down my head.

You had three other surgeries, including one to scrape out scar tissue. In 2025, it’ll be a decade since all of that happened. Now you speak to young patients, in part as a patient ambassador for Horizon, which makes a CGD drug. Can you tell me about that work? 

Actually, growing up, I was that kid who didn’t want to go to events about my condition because I didn’t want to acknowledge or have to deal with it outside of dealing with it. But my nurse brought up the opportunity to speak to other CGD patients. And I guess being older and dealing with what I had dealt with, it was less of having to go talk about what you’ve gone through. For me, the mindset was: help these kids avoid what you dealt with. 

“Living With” explores the contours of life with chronic illness, from the prelude to diagnosis to new patterns of living, to wrestling with big questions about illness and health. Would you like to share your story of living with a chronic illness? Email [email protected].

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