Suki Tripp was diagnosed with a rare blood disorder that triggers unpredictable and life-threatening allergic reactions

NEED TO KNOW

Mom of 4 Suki Tipp first went into anaphylactic shock after being stung by a wasp
The extreme reaction was caused by a rare blood disorder, indolent systemic mastocytosis
Tripp stayed home for years because of unpredictable triggers that could kill her

Suki Tipp went to two different GI specialists, a family practitioner, an allergist and a neurologist trying to determine what was wrong with her. Starting in late 2015, the active mother of four from Troy, Alabama, was having headaches, stomach pains, mood swings, and a mysterious itchy rash.

It wasn't until 2017, when she went into anaphylaxis after being stung by a wasp, that she was diagnosed with indolent systemic mastocytosis (ISM) and learned that all her mysterious ailments were connected.

“It’s a rather rare blood disorder,” one of her doctors, Dr. Pankit Vacchani, hematologist and oncologist at the University of Alabama in Birmingham, says. "It is not hereditary, it’s caused by a genetic change in the KIT gene. There’s no known cause of why this gene mutates in some people — it just happens.”

As he explains, everyone has "mast" cells in their bodies to help fight toxins and infections. But ISM causes an “over-buildup” of mast cells. They “get triggered by the slightest of issues," causing a variety of reactions, including skin lesions, diarrhea, heartburn, abdominal pain, headaches, memory issues, dizziness, weight loss, night sweats, itching and flushing. It can even cause bone health issues such as early-onset osteoporosis.

In Tipp’s case, her symptoms started with extreme stomach pain. She had three colonoscopies, but everything looked fine — and the pain would come and go. She experienced intense itching on her skin, resulting in a rash that looked like she had been bitten by ants.

But then she was stung by the wasp in 2017, and that new trigger was the first that threatened her life. "It could no longer be ignored," Tripp, now 43, says.

The bite was so painful, it felt like a snake bite. She recalls a distinct burning feeling. Hot and dizzy, she went back to her house and lay on top of the air-conditioning floor vents. She texted her husband, “Help me.”

Her husband, Chad Tipp, found her in anaphylactic shock, with her eyes rolled back. She was drenched in sweat and foaming at the mouth.

He called 911 while driving her to Troy Regional Medical Center, where she coded three times. Tipp spent 10 days in the critical care unit. She made an appointment with an allergist as soon as she was released.

Eventually, the allergist told her he suspected she had indolent systemic mastocytosis. She went to MD Anderson in Houston, Texas – 500 miles from her home – for a bone marrow biopsy on March 23, 2018, which confirmed the diagnosis.

After that, her condition quickly worsened. “I was starting to have allergic reactions to just almost anything,” she says. She was suddenly allergic to foods, perfumes, deoderants, detergents, cleaning products and more. One day, she ate a strawberry and was perfectly fine. The next day, she went to eat another strawberry, and she had an allergic reaction.

“This isn't unusual to hear at all. In fact, people typically discover more triggers as they go along,” Vacchani says.

Tipp's reactions to new triggers included throat closing, tongue swelling, flushing, itching, vomiting, diarrhea, brain fog, bone pain, headaches and extreme stomach pain.

In September 2018, she woke up without eyebrows. “My husband’s a jokester, my kids thought that he had shaved my eyebrows as a practical joke,” she says. In about three days, all her hair fell out.

Hair loss can happen to patients with IMS, her doctor says.

Before she was diagnosed, Tipp would take her kids hiking and whitewater rafting. She volunteered and chaperoned field trips. She had her real estate license and worked as a project manager and interior designer.

But when her allergic reactions intensified, she had to stop working because she could no longer go into other people’s homes or businesses without ending up in the emergency room.

She became afraid to leave the house, which was difficult because at the time her kids were busy with activities. Ramsay was 15, Aurora was 12, Paul Sawyer was 10, and Georgia was 8. She couldn't go to her kids’ soccer games, football games, baseball games, dance recitals or award ceremonies. “I missed all of those things,” she says.

She tried to watch her daughter cheer at a football game, but even sitting high up in the stands away from people, she went into shock. And when she tried to drop something at the post office, she went into anaphylaxis because the floor had been freshly mopped.

Once she was picking up her kids from school. "I thought I was safe in my car," she says. But she went into anaphylaxis sitting in the pickup line, because someone a few cars ahead of her was smoking. She flung open her car door and fell out. A crossing guard called 911.

“It’s extremely frightening,” she says. “It was happening so often. One year, I used 99 EpiPens.”

She spent nearly five years mostly staying home because it was the only way she could control her environment. “You can keep your home as your fortress, your safe place,” she says.

“If I went somewhere, I made sure that I had my husband or one of my kids with me," Tipp adds. "My kids have saved my life more times than I can count — the youngest gave me the first EpiPen around 7.”

“There was a point that I was pretty much in the bed, and I was ready to give up,” she says. “My husband, my mom and my sisters were like, ‘No, that’s not the place we are.’ But I didn’t know when the next allergic reaction was going to be that just took me out. And at one point in time, I thought it would be better to just not have to be going through this anymore. It was an awful place to be.”

She wrote letters to her children for when they graduated school and got married. “I didn’t think I was going to be there, because the episodes were so bad,” she says.

Courtesy of Suki Tipp Suki and her husband and children at her son Ramsey's graduation from AAT for the Army National Guard

Her husband encouraged her to keep going and search for more treatment options.

She takes a small pill daily, the medication targets the specific gene that causes her condition.

Within six months, she started feeling better.

“She benefited tremendously,” says Vacchani, who is one of the principle investigators on the trial. “Within a few months, she noted dramatic improvements.”

Today, her children are 22, 19, 16 and 14. She is back to working, she and her husband own an engineering firm.

When Tipp’s daughter graduated high school last year, she was not only able to attend the ceremony but she hosted a party and went on a celebratory cruise. Her younger two children play varsity tennis, and she goes to every match.

“I am trying to take in every single moment. My husband's like, "You're doing too much." I'm like, "But I missed so much," she says.

The last EpiPen she used was 18 months ago.

Now she is sharing her story to raise awareness of her condition because she believes that there are other people suffering. “I’m of the opinion that my condition is less rare than we believe," she says.

“You have got to advocate for yourself. And if you know down in your heart that something's not right, you've got to keep pushing forward.”