Thousands of Miles to a Hereditary Angioedema Diagnosis

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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The gas gauge needle settled on 3/4 full, and I sighed in relief. However, as I began the 80-mile trek home, the idea that I’d likely be stuck in traffic overshadowed my relief.

I glanced in the rearview mirror to check on my daughter. There she was, curled up in her self-made fort in the back seat. Like many other times, I knew I’d barely make it to the highway before she fell asleep. I shrugged, put my headphones in to start the overture of one of my favorite Broadway shows, and pulled out of the parking lot.

While I merged into the flow of Music City traffic, I was somewhat discouraged. It was the sixth appointment in four months, leaving us with unanswered questions. Sure, our daughter, whom we fondly refer to as Ladybug, had a new prescription to attempt to control her unknown allergy flares, but I was still left with the ominous question “why?” Why didn’t EpiPen work for whatever this was? Why do her lips keep swelling? These questions loomed in my head as I drove back to Alabama.

She was taking six prescribed medications, and we had even switched her to a strict plant-based diet out of desperation. Additionally, we limited her outside time, kept her from playing in the grass, and obsessed over keeping her room dust-free. Short of putting her in a bubble, as so many of our friends harmlessly joked, we had tried everything.

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A few weeks later, when her swollen face and difficulty breathing landed her in the pediatric intensive care unit, I was so confused. How could we have logged a little over 700 medical miles and still have no answers?

Another crisis, another direction

We showed up at the ER with her a few weeks later, when she had an itchy tongue, a swelling face, and severe abdominal pain. At the time, I had no idea what a prodrome was or that her achy stomach was not a case of severe constipation. By the time the doctor came in, I was at my wit’s end.

“I feel like we’re fighting something inside of her,” I said to him, slightly elevated. “And she doesn’t need more medicine, or laxatives, or steroids. I need answers!” He excused himself and then returned with a sticky note.

“Call this doctor tomorrow morning,” he said as he handed the note to me. “He’s local, and I think he may have the answers you need.”

The following week, we drove 18 miles to a new allergist. I was so relieved that it wasn’t that far. But my heart sank when the allergist said, “This is above my expertise. But I have a friend in Birmingham I think she should see.”

Birmingham? Was he kidding? That was 101 miles from our house! I rejected the idea of more commuting for zero answers. Yet we had no options. My daughter was miserable, in utter discomfort, and we didn’t know why.

The trek to answers

But we — Ladybug, my husband, and I — would take that trip to Birmingham the following week. To our surprise, we found ourselves in an appointment where the doctor asked more in-depth questions. He seemed to be more interested in other symptoms like her occasionally aching hands, the odd times her shoes wouldn’t fit quite right, or the way her face would tingle before her “allergic reaction” would appear.

“I think I know what this is,” he would say at the end of almost a 45-minute visit. “But just know that we may have to go down some other roads before we reach the answer I think it is.” I was OK with that. Why? Because for the first time, the miles we had traveled seemed worth the trip.

We would make more trips to the pediatric ER after that, but there were blood tests now. And we would make more trips to Birmingham, too, but now there were updates and more investigative conversations. And after logging over 2,000 medical miles, we had her diagnosis: hereditary angioedema.

True, this diagnosis would bring about many more journeys, but we had an answer. And if I had to do it all over again, if I were faced with having to repeat trying to find the answer to my daughter’s diagnosis, I wouldn’t hesitate to drive a thousand more miles.

Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to angioedema.


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