That Time I Was Diagnosed With Potentially Fatal African Sleeping Disease

“Sorry to call so late. We’ve looked at some of your blood work from the lab and need you to come down right away.”

After spending 12 hours in the emergency room, this is a call you never want to hear. And it wasn’t the receptionist calling, it was the doctor.

“I thought you said everything looked fine?” I asked, confused and starting to panic.

“…Well we found something new. Bring a backpack. You might be here a few days…”

My mind was spinning. What could it be? I’d just spent a month in Ghana, Africa, doing a homestay and traveling the country on weekends. I spent the last few days of the trip in the Volta Region, where I began to experience symptoms I’d never encountered. While the dizziness, nausea and headaches were familiar, the inability to walk three steps without getting completely winded was crippling, as was the feeling there were sharp rocks bouncing around in my chest.

Scary News

When I arrived back at the hospital there was no waiting; I was immediately brought to an examination room to be seen. At this time my 23-year-old mind’s “invincibility complex” was kicking in, and I figured no matter what it was I would be fine. I was too young, too fit and too health conscious to get sick.

“You have African trypanosomiasis, also known as sleeping sickness,” the doctor explained. “It’s caused by the tsetse fly. You must have been bitten.”

He continued explaining that the name came from the fact the parasite moves up your spine, into your brain, and paralyzes you, putting you to “sleep” forever until you die. It was an extremely rare parasite — for the United States, anyway — that took over the red blood cells.

Still, I felt oddly calm. I could fight this.

“We’re going to need to do a spinal tap to see how far up the spine the disease has spread.”

And then the tears came. Was my life about to become an endless string of 10-foot-long needles? Okay, that’s an exaggeration, but to me it looked to be about as long as a Monty Python, especially going into your spine. I cried so hard they had their funniest nurse come in to hold my hand and tell me jokes while the procedure was done. While I felt some unnerving pressure in my back, for the most part it was okay.

Until the I.V. I know this may sound crazy, but I would rather get 20 spinal taps than have an I.V. put in my arm. There’s just something unsettling about having a piece of plastic inside your arm that makes me nauseous and freaks me out. The nurses offered me a bedpan so I wouldn’t have to walk with it to the bathroom, and adorned it with ribbons to make it look “less scary” — not to mention gave me an Ambien so I could fall asleep. Maybe this wouldn’t be so bad.

In all seriousness, though, it was terrifying, and really upsetting seeing the look on my parent’s face. If you think you’ve seen your parents upset when you’ve snuck out of the house, missed curfew or racked up too many speeding tickets, try telling them you have a fatal disease. Then you’ll know the meaning of upset. Although instead of being angry, this time they were just distraught.

Since sleeping disease isn’t exactly common in New York, the doctor’s briefed my family and I on what we would say to the media if word of this got out. In fact, I was the very first case of sleeping disease ever in New York State. One of the doctor’s even asked if he could do a case study on me.

“At least I’m breaking records,” I thought to myself wryly.

Treatment

Luckily, the disease was not found to have traveled near to my brain yet; however, that didn’t mean I was free to go. The next few days were an endless series of CAT scans, blood work and interviews with the Center for Disease Control. As this was an extreme case, they had to be brought in to consult, especially since the treatment options were all considered extremely toxic and poisonous (and illegal). My treatment would essentially be shooting Cianide straight into my veins to kill the parasite.

I remember one morning being brought a danish for breakfast. As an athlete and someone concerned with eating healthy, there was no way I was eating a danish as a meal — that was dessert!

“Excuse me,” I said to the nurse. “I don’t eat danishes. Can I have some fruit?”

She snickered. “Hunny, you’re going to lose at least 30 pounds on that Cianide treatment. You’ll be throwing up nonstop. You can have 10 Big Macs right now and it won’t matter.”

I rolled my eyes. Well, at least I’ll fit into my jeans from high school.

Journal Entry

Looking back I found this journal entry I wrote while in the hospital, which I thought would be interested to share:

Although I have been home from Ghana, Africa, for a few days now, this is the first moment I am actually sitting in my room. On Friday I stepped off my plane home at 5:52 AM and headed straight for the Infectious Disease doctor. During my last week in Ghana, I began to experience an array of intense symptoms, including fever, intense headaches, swollen lymph nodes, painful cough, painful breathing and trouble breathing, shortness of breath and dizziness. Because I was in Africa I figured the worst, Malaria. Little did I know that my diagnosis would be something even worse.By the time I got home most of the symptoms had subsided, but being that I had been in a foreign country, I decided to get checked out anyway, just in case. The doctor prescribed a litany of tests and sent me to Emergency Room, where I spent the next 8 hours strapped to an IV and having blood taken multiple times, X-rays, CT scans, and cultures. When it was all said and done, they told me they couldn’t find anything and I could go home.Relieved, I headed out with my parents and mentally prepared for a night of Jersey Shore re-runs that I had missed. However, as soon as I walked in the door at home the phone rang. It was the doctor, and he wanted me to come back to the hospital right away. 

He sat me down and told me that they had found an extremely rare parasite in my red blood cells, so rare that the hospital had never seen a case like mine. He explained that the disease was known as African Sleeping Sickness, because the parasite moves up your spine, into your brain, and paralyzes you, putting you to “sleep” forever until you die. She then explained they would be taking a spinal tap from me to see how far the parasite had progressed and what course of action they would need to take.

Of course, I cried like a baby. How could this happen to me? I’d heard of Malaria but never this. How could this happen to me?

A Surprising Ending

I called out of work for the following two weeks, e-mailed all of the editors I had been writing for, and let all of my friends and family know what was happening. I was bruised, bloody and scared and just wanted to go back to running, writing and going out with my friends. My best friends came to visit, bringing me candy to cheer me up. Just as we began watching Beyonce perform at the VMA’s the doctor walked in.

“Good news. You actually don’t have sleeping disease,” he said. “It was a broken platelet that resembled the disease. We are going to take some more blood, but you can probably go home tomorrow.”

I was in shock. Moments before I was possibly dying and now I didn’t have … anything. Not even the flu. I felt kind of silly, as I had told the entire world and all of my employers that I had a deadly illness, and now I was free to go run a marathon if I wanted. It was a miracle.

I never did find out what I had, which even now three years later bothers me at times. Especially after undergoing so many tests and being put through the scariest news of my life — not to mention the wonderful bill I received — I wanted answers. Sadly, I never got them and I never will.

Life Lessons

There are a few things I hope you take away from my harrowing tale. For one, anything can happen. Always get checked out by a doctor if you think something is wrong — especially when traveling — because you don’t want to end up damaging your body permanently. Although I went through a lot of pain that didn’t end up being necessary it was important to do, because without all of the tests I could have let something really serious go unnoticed. Additionally, always realize how strong you are. While being told you might die might sound like something you couldn’t handle, if you do take the necessary steps to get better, think positive and stay strong, you can accomplish things you never thought possible.

Have you ever been misdiagnosed/diagnosed with a terrifying illness? Please share your story in the comments below.