I got stung by a wasp — and the allergic reaction forced me to spend the next 3 years of my life indoors

• Suki Tipp had been stung by insects before, but she nearly died of a wasp sting when she was 36.
• Doctors diagnosed a rare allergic disorder and said it was too dangerous for her to leave home.
• After three years of living "under house arrest," Tipp said that a new drug set her free.

This as-told-to essay is based on a conversation with Suki Tipp. It has been edited for length and clarity.

I've lost count of the number of family occasions I've missed out on. Everything from sports events to graduations to the beauty pageants my older daughter loved.

We never went on vacation. The only time I left the house was to visit the doctor's office. Even before COVID, I had to wear a face mask for the trip.

The outside world was too dangerous for me. The issue started with a seemingly innocuous wasp sting. I became a prisoner in my own home after getting stung in 2018, when I was 36 years old. It was almost like serving three years in jail.

My husband, Chad, and I were moving furniture in the barn near our house. I didn't realize there was a wasps' nest in one of the shelving units, and I got stung on the forearm.

I had this strange taste in my mouth that reminded me of the smell of bug spray or weed killer. I'd been stung by wasps before but never experienced anything like that. I started getting really hot and breathing hard. "Wow, this must be some strange sort of wasp," I said. I felt increasingly sick.

I walked the 200 yards back to the house and felt dizzy. My body was on fire. I lay down on the floor on top of an air- conditioning vent. I somehow managed to reach for my phone and text "Help!" to Chad.

I'd come close to death — but the risk was still there

He found me unconscious. He said that I'd vomited, my eyes were rolled back, and I was foaming at my mouth. I was hardly breathing.

He drove me to the ER, where I coded three times. They used the pads to shock me. It turned out to be anaphylaxis. I came to while they injected more epinephrine under my tongue.

I spent 10 days in critical care. I knew how close I'd come to death, and the risk was still there. I had Epi-Pens, but ended up back at the hospital multiple times. The nurses kept a binder on me because I was there so often with extreme histamine reactions.

The allergy triggers could be anything from fresh fruit to meat or rice. It didn't make sense. One day, I'd be fine eating something; the next day, it would nearly kill me. I was also affected by the products that I inhaled. I was allergic to most chemicals — I couldn't go into the post office or even the kids' schools because of the products used to clean them. If someone wore deodorant or used a certain brand of toothpaste or laundry detergent, I couldn't go near them.

It got to the point where my husband and four kids had to undress in the garage and shower before entering the house, just in case they'd picked up some allergens from outside. One day I was in line in my car when someone started smoking in the car in front. I couldn't breathe. I opened my door to try and get help and fell on the curb.

It took the doctors a while to figure out the exact diagnosis. But after a lot of blood work and allergen tests, they discovered that I had a rare condition called systemic mastocytosis. It happens when abnormal mast cells — a type of white blood cell that helps manage the immune system — accumulate in different areas of the body. According to the Genetic and Rare Diseases Information Center,  less than 200,000 adults in the US currently have the disease.

I felt angry, depressed, and jealous of other people who were able to live normally

I was treated by an immunologist and an oncologist. I lost all my hair at once because the mast cells attacked my hair follicles. It was so itchy, and my hair didn't grow back for several months.

I tried different medications, including steroids. But nothing really worked. If I was exposed to an allergen, I'd have to stay in bed for a week. I had no choice but to live in a bubble.

It was horrible. I felt angry, depressed, and jealous of people who were able to live normal lives. I wanted my husband and kids to go out and enjoy themselves, but I felt resentful because I was stuck in the house. Then they'd feel guilty for leaving me behind. We used to go on vacations, visit museums, and love horseback riding. I couldn't do any of those things.

We'd watch a lot of movies or play board games or card games at the house. It was hard on me, but it was also really hard on my children. They never complained, but they grew up quickly. My youngest daughter was 8 when she called 911 for the first time and gave me an Epi-Pen. No child should have to go through the pressure of saving their mom's life. I never wanted to hurt myself, but at one point I thought, "I don't really care if I die next time I get sick."

In 2021, my oncologist recommended a clinical trial of a new drug called Ayvakit. It's an inhibitor that targets the genetic mutation that is the primary underlying cause of SM. The medication reduced my allergic reactions to the extent that I could reclaim my life. In May, it was approved by the US Food and Drug Administration to treat people like me.

It felt incredible to be able to go out with my family again

My husband and I almost had a panic attack when I first left the house, but we did it in baby steps. I was nervous about big crowds, so we started out at a local grocery store. In the past, I would've had symptoms like flushing and overheating, but nothing happened. After a while, I felt confident enough to go pretty much anywhere. I attended my youngest son's graduation from middle school this summer. I was surrounded by other parents. It felt incredible.

And we finally went on vacation. We've been kayaking and hiking as a family, and I'm loving the outdoors — even the insects.

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