Anna Gillian Cramer had always hoped that raising funds for cystic fibrosis research for decades would help combat her disease, but she never dreamed that a drug from that research would change her life.
Until it did.
Cramer, 36, was diagnosed with cystic fibrosis when she was four months old.
“When I was born, they told my parents my life expectancy was 15,” she said.
Her parents are Dorothy and Tim Gillian, both deeply involved Forest Parkers with roles in local government and local business. Dorothy Gillian started fundraising for the Chicago chapter of the Cystic Fibrosis Foundation in 1989 when her daughter was two-and-a-half. The family has raised roughly $750,000 over the years. The degenerative genetic disease that affects the body’s lungs didn’t affect Cramer much when she was a kid in Forest Park, but Gillian knew it would someday.
“I had a pretty average, healthy childhood. I wasn’t really that sick,” Cramer, of Brookfield, said. But every two years, Gillian organized fundraisers in Forest Park, attended by extended family and locals, and donated the money to cystic fibrosis research. That fundraiser is coming up this spring.
Though Cramer regularly attended doctor’s appointments and had breathing treatments, her health began to decline when she started at the University of Kansas.
“I would get a cold or a run-of-the-mill illness that I wouldn’t really be able to fight. I would get really run down,” Cramer said. And the medicine to cure such illnesses had to be administered to Cramer intravenously, she said, because people with cystic fibrosis are often resistant to many antibiotics. “My sophomore year of college, I would be in the hospital for a two-week stay every six months.”
Cramer graduated in 2011 with a master’s degree in architecture and moved to Chicago to work as an architect. But four years later, she quit her job because she needed more flexibility for the day-to-day care of her cystic fibrosis.
Then in October 2019, the Food and Drug Administration approved the prescription drug Trikafta. The pill targets the cause of cystic fibrosis, a defective protein created by a genetic mutation. Cramer said it’s unlike most medications on the market, which affect symptoms of cystic fibrosis, like the build-up of mucus in the lungs. Since Cramer started taking Trikafta in late 2019, her health has improved significantly.
She’s not alone. A 2022 study of more than 30,000 patients in the Cystic Fibrosis Foundation’s registry found that the number of pregnancies reported by those with cystic fibrosis was 310 in 2019 – which increased over 100% to 634 in 2022.
The study said that increased pregnancies – along with a decrease in lung transplants, from 259 in 2017 to 53 in 2022 – is likely a result of Trikafta improving the lung health of those with cystic fibrosis.
But she never expected miracles. In late 2018, Cramer went to a doctor’s appointment where she was told to plan for a lung transplant the following year. Cramer had around 40% lung function and said that because of it, everything from working to having a social life was challenging.
“You kind of go along until your lungs can’t take it anymore, and then you do a double lung transplant. That is the path for many cystic fibrosis patients,” Cramer said. “I never thought that it would get to that point, and it sort of creeped up on us.”
The day of that doctor’s appointment, Cramer’s boyfriend, the man who would become her husband, proposed.
“He said that there was nothing any doctor could say that would make him not want to marry me,” Cramer said as Gillian, seated next to her, teared up.
Two weeks before Cramer’s wedding in 2019, the FDA approved Trikafta. When she returned from her honeymoon, she was hospitalized over Christmas, then started taking the drug.
“Before Trikafta, my quality of life was very low,” Cramer said. “I coughed nonstop. I was sick nonstop. I had no energy. I was only working part-time,” as a real estate broker alongside Gillian.
Cramer said Trikafta’s effects were immediate: She stopped coughing and hasn’t needed an IV since late 2019. With Gillian, Cramer now co-owns a real estate company called the Gillian Group, which primarily sells properties in Forest Park. And in June 2023, she gave birth to Dottie, named after her mother.
“Kids were not in the cards because I wasn’t healthy enough.” But, she added, “She’s here and healthy, and so am I. I’m enjoying mom life.”
Though Trikafta has transformed her life, Cramer and her family continue fundraising for cystic fibrosis research. According to the National Library of Medicine, Trikafta helps around 70% of people with cystic fibrosis, those who have the most common genetic mutation that causes the disease.
“Not every person with cystic fibrosis is eligible to take this medication,” Cramer said. “We can’t just stop the effort because people like me have a treatment.” She added: “We’re very fortunate.”
“When you can say, ‘Wow, look at what your fundraising dollars have done for Anna and everyone else,’ it’s very cool,” Gillian said. “The research, and money that we raised over the years, has come full circle. It really worked.”