After spending much of her adolescence fighting a rare disease, University of Iowa graduate student Emily Inman is still battling the aftereffects—but you wouldn’t know it unless she told you.
“There are a lot of survivors like me who look fine on the outside but have to take a handful of pills every day,” she says. “Basically, my life is drastically different because of all my long-term side effects.”
Inman, 24, is pursuing a Master of Public Health degree from the College of Public Health. Knowing the unique challenges that arise during and after a severe childhood illness, she plans to dedicate her career to advocating for pediatric cancer survivors and their families.
The diagnosis
Inman was 10 years old when a simple undergarment helped reveal her illness. Like many other fifth-grade girls, she was thrilled to wear her first training bra, but soon a strange purple ring developed where the elastic hugged her chest. Assuming it was an allergic reaction, Inman’s mom took her to the doctor.
“He told us to go to the trauma hospital as soon as possible,” recalls Inman. After a flurry of tests, in February 2000 Inman and her parents learned she had aplastic anemia, a blood disorder in which the bone marrow fails to make enough blood cells. The purple ring was abnormal bruising, one of the symptoms of the condition, along with fatigue and recurring or severe infections.
The recommended treatment for the disease, which is treated as a cancer, was a bone marrow transplant. However, despite extensive searching, no match could be found.
Meanwhile, “I was living blood transfusion to blood transfusion,” says Inman. “I was on steroid therapy and receiving injections to boost my white cell count.”
Inman was pulled out of school and hospitalized near her Chicago-area home, where her only visitors were immediate family fully masked, gloved, and gowned. The decision was made to try an immunosuppressive treatment called ATG therapy.
The treatment began working, and by October 2000, Inman was in remission. She returned to school, but still required numerous post-transplant drugs. Things were looking up, but not for long.
“I had a seizure one night,” Inman says. “I coded on the way to the hospital. I was in a coma for a week and in the ICU for three weeks. They didn’t think I was going to make it.”
Gains and losses
Inman underwent another ATG treatment that was considered a long-shot, but she pulled through.
As she recovered, her family was dealt another blow. In February 2001, her mother had an aneurism at work and passed away the next day.
Despite this loss, Inman’s health continued to improve over the next several years. She was in full remission by the time she was a high school freshman. After graduation, she enrolled at the University of Iowa with the goal of becoming an oncologist.
But during her first year at Iowa, more health problems surfaced, including seizures. She was placed on a high dose of seizure medication that led to severe headaches and cognitive problems, making it difficult to study.
“I was also having long-term side effects from the steroid treatments and chemotherapy,” explains Inman, “I was in a lot of pain, and I was mentally distressed. I wasn’t pursuing my academic goals, and I was missing out on social activities. I was living away from home. I had a new fight of being 19 but being considered an adult medically. I had to do paperwork, go to appointments, and meet with specialists alone.
“You’re taking all these medications, plus coping with the fact that these problems aren’t going away anytime soon,” continues Inman, who contends with early-onset osteoporosis, osteoarthritis, and heart and kidney problems. “You’re cured, but you still have long-term side effects.”
Survivorship care
At the UI, Inman switched her focus and graduated in 2012 with a major in journalism and global health. She also found a new purpose: “In advocating for myself, I realized my life goal is to help other children and young adults once they reach survivorship,” she says. “More childhood cancer survivors are alive today than ever before, which means there’s a growing population in need of survivorship care.”
According to one journal article, 8 out of 10 childhood cancer survivors live well into adulthood. However, more than 60 percent will also experience one or more long-term side effects from their cancer or its treatment in their lifetime, including reoccurrence of cancer.
Using her public health education, Inman envisions creating a holistic program to educate family members, teachers, and medical providers about the physical, mental, and cognitive challenges that cancer survivors face.
“Once a child reaches remission status, I’d like to come into the picture and talk to the parents about what the child’s journey will be,” says Inman. That includes discussions about obstacles to academic and social development and helping families to locate resources. She’d also talk with the patient and share her own and others’ experiences of re-integrating into school.
Another aspect, says Inman, is talking to school administrators and teachers and reminding them that “just because the [student] is in remission doesn’t mean treatment has stopped. They might need additional surgery or face major follow-up care. I want to help [the student get] what they need from the school.”
Inman also points out that after remission, patients are released back to general medical care.
“A lot of general practitioners aren’t familiar with rare cancer treatments and new cancer drugs. I’d like to meet with the practitioner to review the patient’s type of cancer and surgeries, the long-term side effects and secondary cancers most likely to occur, and the patient’s family and school situation, enabling that practitioner to deliver the best care.
“You may be cured, but it never goes away,” Inman concludes. “The concept of having hope but coping at the same time is a little foreign to public health, but it’s starting to gain attention.”
Editor's Note: This story was originally published in InSight, the UI College of Public Health's magazine for alumni and friends.