She was diagnosed in infancy with an immune deficiency. After spending years as a patient at Riley Hospital for Children, Elizabeth Erne now seeks treatment at IU Health Simon Cancer Center.
She was less than a year old when Elizabeth Erne was diagnosed with Common Variable Immune Deficiency (CIVD).
The disorder is known to make patients more susceptible to bacteria, viruses, and infections. The diagnosis ultimately led to regular visits to Riley Hospital where Erne’s family traveled three hours from their northern Indiana home and she received eight hours of treatment every four weeks.
“My first memories were about the age of eight when I started a clinical trial. I had terrible reactions – back pain and high fever,” said Erne, a Kindergarten teacher who lives in Warsaw, Ind. “The treatments got better as I got older. It took less time and the reactions weren’t as bad.” Now she comes every two weeks to IU Health Simon Cancer Center for the infusions.
She was in the sixth grade when Erne was grocery shopping with her mom and she complained of a stomachache. It was at that time that her life was defined by more than one diagnosis.
“My stomach looked swollen I found out my spleen was enlarged and I had another diagnosis. My spleen was digesting my platelets and wasn’t letting them out,” said Erne. “I was rushed to Riley and my spleen was taken out and they gave me a port. They thought I had lymphoma and was hospital three months during the summer before seventh grade year. The diagnosis was Immune Thrombocytopenic Purpura ITP), a bleeding disorder where the immune system destroys platelets, necessary for blood to clot.
“I remember watching fireworks on the rooftop of Riley. That was one of my better memories. Riley always had such cool experiences to distract you – like visits from Colts players and racecar drivers,” said Erne. A 2014 graduate of Triton Junior-Senior High School she was in a class of about 50. She tried to remain as active as possible in school taking part in softball and National Honor Society. But her diagnosis continued. At one point she was told she had bronchiolitis, a lung infection that causes inflammation and congestion in children.
“With CIVD you learn that you get lots of other illness. You get sick over a lot of little things,” said Erne. She’s learned to live with it and her family has been there to support her – her parents Brian and Kim Erne and her older sister Nicole.
She remembers her senior year getting ready to head for the big class trip to Washington, DC. When she was diagnosed with shingles.
“I’m a history buff and was really looking forward to that trip but I pretty much spent the time in isolation,” said Erne.
After high school she went to Ball State where she pursued a teaching degree.
“Here I am someone with an immune deficiency and my doctors said teaching wasn’t the best choice, but I couldn’t deny my passion for children. So I became a germ freak,” said Erne who worked as a Kindergarten teacher. She met a marketing major named Jayden Mosier her freshman year in college.
“Once I met him he embraced my health and understood my challenges. Our sophomore year we lived one floor apart in our dorms and he helped me make good choices about taking care of myself,” said Erne. She graduated from Ball State in May of 2018 and they were engaged last November.
“He asked me on Nov. 17 to marry him. We had just adopted a beagle from the shelter and his mom was taking pictures of us for our Christmas card,” said Erne. “ It was a cold and snowy day and he asked me to marry him. Because I was outside in the cold I contracted pneumonia.” She was hospitalized for a month had two surgeries including one to remove the infection from her lung.
“I spent my birthday in December on a ventilator because the infection wasn’t clearing up. It was a scary time but in a way it really showed us what life will be like – forever,” said Erne.
And now she’s looking forward to this December. The couple will exchange vows on Dec. 21 – 16 days after her 24th birthday.
— By T.J. Banes, Journalist, IU Health.
Reach Banes via email firstname.lastname@example.org.