A day in the life of Kenze Messman used to be like that of a typical teen.
She lugged around a backpack full of school supplies and textbooks. With pompoms in hand, she’d head to cheer practice.
But now the Lincoln teen rarely leaves her house. And when Messman does venture out, she has to bring more than a backpack . Her service dog is always in tow, and so are medical supplies, including a must-have stash of Benadryl. She sometimes uses a wheelchair. As for pens, she’s swapped the ballpoint for an EpiPen.
Over the last two years, Messman has been diagnosed with several chronic illnesses. Sometimes her heart rate climbs, seizures send her to the floor and migraines leave her in the dark. And one of the ailments causes the 17-year-old to have allergic reactions to almost everything.
Soon after the symptoms started, “my life did an entire 180,” Messman said.
In 2016, Messman was diagnosed with mast cell activation syndrome, which causes her to have allergic reactions: to sunlight, fruit — citrus is particularly bad — certain medications, chocolate. When it’s freezing outside, she cracks a window, because heat gives her hives.
Mast cells, which are white blood cells, are one of the first lines of defense against things that are foreign to the body, said Dr. Tania Dempsey, a New York-based expert on the illness. The cells release chemicals to fight off things it deems foreign and dangerous to the body. In someone with mast cell activation syndrome, the mast cells inappropriately release the chemicals, causing inflammation and potentially life-threatening reactions.
“Patients with mast cell activation syndrome are very reactive,” said Dempsey, who has not treated Messman but has been in contact with the family. “Their mast cells are on high alert, and they get triggered very easily.”
Dempsey estimated that nearly 20 percent of the American population has some form of the disease. It’s uncommon to have a form as severe as Messman’s, she said.
Mom Angie Parde said it isn’t clear why the disease surfaced so late for her daughter. But, Dempsey said, certain circumstances, such as puberty or stress, could cause the disease to appear.
Growing up, Messman had reactions, including one that caused anaphylaxis, or acute allergic reactions. She started vomiting. Then came hives. She struggled to breathe as her airways started closing.
Blood work came back normal.
Then in June 2015, on the family’s way home from a weekend at the lake, Messman’s face ballooned up in the car. She was still swollen the next day. Doctors told her mom it was probably a fluke and couldn’t pinpoint a cause. They gave her steroids and Benadryl. After a couple weeks, it went away.
Messman had more reactions that caused swelling and hives. None were severe, so they dealt with the incidents as they came up.
During the first week of school that same year, Messman had three reactions. The second week, she broke out in hives, and swelling led to her airways closing. By mid-September, she’d taken a handful of ambulance rides to the hospital.
Sometimes Messman could go back to class after a reaction. But on the more severe days, and the ones involving trips to the emergency room, there was no going back to class.
She stopped going to school and started taking online classes. She saw specialists. She underwent two hospital stays.
Parde became devoted to researching her daughter’s symptoms. She called it “a whole year of chaos.” It affected Messman’s brother and sister, too.
“It was tough and our lives completely did a 180-degree change from active and fun, to not doing a thing,” she said. “We thought that Kenze would just get better — it would be temporary.”
By spring 2016, Messman got an appointment at the Mayo Clinic, where doctors diagnosed her with mast cell activation syndrome.
Later that year, Messman also would be diagnosed with Ehlers-Danlos syndrome, which affects the connective tissues, and postural orthostatic tachycardia syndrome, which can cause dizziness and increased heart rate, among other symptoms. It isn’t uncommon to see individuals diagnosed with all three syndromes, Dempsey said.
“I was upset having to even be diagnosed with anything, but it was very relieving knowing I wasn’t alone and what I had had a name,” Messman said.
Messman’s had reactions triggered by foods, including most fruits, milk and chocolate. But she’s also been bothered by sunlight and heat; strong smells, like perfumes and cigarette smoke; certain medications; and stress. Messman might react to a food or other trigger one day and not the next.
“We just take each day as it goes,” Parde said. “She wakes up and feels amazing and that’s a good day. She knows how to adjust to her bad days.”
Messman is still learning how to “live life” with the ailments. Getting a service dog helped. Makki, a 2-year-old goldendoodle, can alert Messman to trouble: She licks her handler’s fingers before an allergic reaction. Then Messman can pop a Benadryl to lessen the severity. She nudges Messman’s hand before a fainting spell and paws at Messman’s leg before a seizure. Since getting the dog two years ago, the teen hasn’t had to go the hospital because of a reaction, her mom said.
Makki also helped Messman come to terms with her situation. She had to focus on training and taking care of a puppy.
“Before I got Makki, I was mainly in bed all the time, not feeling good,” Messman said. “Makki kind of made me get out. ... Doing all that kind of forced me to get a better hold on my health and push myself more.”
Since getting the dog, Messman feels more comfortable leaving the house. And mom feels reassured, too.
Messman still hangs out with her friends, though they usually spend time at someone’s house rather than going out in public.
“I’m really thankful they stuck with me. I couldn’t do it without them,” she said.
Patients with mast cell activation syndrome can get better, Dempsey said. Each person’s body reacts differently to triggers and treatments. The first step is identifying triggers and finding out what medications and treatments are effective.
“I don’t have a crystal ball, so I can’t foresee the future, but my life’s work is in trying to get these patients better,” Dempsey said. “It may always be part of (Messman’s) life, but it doesn’t have to be to this extent.”
Messman will graduate with her Waverly High School classmates this May. She hopes to get healthy enough to go to college. If she can’t have the typical experience, she’ll take classes online, as she does now. Her goal is to become a writer.
“She just goes with it,” her mom said. “She was that happy-go-lucky girl, and she still is. She’s amazed me through this entire time.”
17 rare and unusual health stories out of Omaha
One rare disease left an Omaha doctor eating a shakelike formula to supplement her diet. A friend said it tasted like cat food. An Omaha man woke up after his family took him off life support. And a Lincoln teen is allergic to almost everything.
Check out the stories on their unusual ailments and sometimes equally unusual treatment plans.