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Amanda &
Emily’s
Story

Meet Amanda and Emily, college students and athletes with PI

Amanda & Emily’s Story

“Having a sister with the same condition as me has been a total blessing because I know she understands me,” says Amanda.

Amanda and Emily are twins both diagnosed with PI during high school. But even though their journey through diagnosis and treatment has come with some rocky patches these positive, forward-thinking young women have never let their illness stop them from taking on challenges, especially when someone tells them the challenge is too great.

It seems you can’t tell the girls what they can and can’t do.

In high school a girl on their cheerleading squad raved about pole vaulting but told the girls they probably couldn’t do it, which the girls viewed as an invitation to try. Seems you can’t tell the girls what they can and can’t do because they both started vaulting and instantly loved it.

Emily admits “as a freshman, I was a bad pole vaulter,” but she and Amanda continued trying. When their high school coach suggested to Emily that maybe pole vaulting wasn’t her thing, the girls sought out ways to improve and traveled three hours from home each weekend to train with a club team. It was there they met Coach Bobby Heack. Bobby took the girls under his wing and really understood the challenges they faced as athletes and as people managing PI.

Once the girls hit a stride with their training, things began changing for the better. They found refuge from the stress of PI in their practice sessions and all of those practices began paying off at meets. Amanda says, “Going to pole vault practice was my escape. I was able to put negative thoughts behind me and focus on what I loved. For the most part, I was just like every other athlete on the track.” For Emily, her time with Bobby resulted in “improving her personal record from 8’6” to 12’0” in one season. I ended my sophomore year taking the state title and deciding that this was something that I wanted to excel in.”

Amanda and Emily, twin sisters and primary immunodeficiency patients

Now as college freshmen, the girls admit there have been some hard times. Amanda struggled for a long time with fear of needles and with gossipy speculation about her health that at times brought her to tears. When explaining the details of her condition didn’t work, Amanda took the moral high ground and learned to “allow [criticism] to roll off my shoulders and not let it get to me.” Emily, whose PI is less severe than Amanda’s, feels she has drawn personal strength from watching how courageously Amanda has dealt with her disease as they’ve adjusted to college life. Emily states, “Amanda has grown so much from this experience that I look up to her and her ability to handle things.”

Having a twin by your side is like being with a best friend all day.

The “blessing” they both talk about in having a shared experience with PI allowed them to support each other as they entered college. During their early weeks at school Amanda couldn’t bring herself to do her own SubQ immune globulin needle stick so Emily rallied and started her sister’s treatments. Emily says having a twin by your side is “like being with a best friend all day.” The girls have certainly thrived with the unique understanding shared by sisters. With her sister’s support, Amanda eventually found the courage to execute her own treatment, needle stick and all.

But their closeness is sometimes a mixed blessing. As best friends and college roommates, both know they run a risk of infecting each other when one of them is sick. They recognize the need to be extremely vigilant in practicing careful cleanliness habits and in avoiding sharing food and drinks, especially when one of them is sick. Through the good habits they learned while growing up they have become well practiced at watching out for each other.

The girls realize how much they have benefitted from the good fortune to have “always been surrounded by uplifting people.” In addition to the coach they love like family, they also have the unwavering support of their parents and doctors. Emily says that “as long as they do everything in moderation and listen to their bodies” their doctors have always encouraged them to vault.

Primary immunodeficiency patient story

Their mother, Ingrid, echoes the girls’ thought about their incredible circle of support by explaining, “The girls doctors were always supportive but it was also equally important that their coaches were aware of their condition so they could have proper expectations of their workout schedule. All of their coaches were always given medical instructions in case of emergencies.”

Amanda says, “Doing track and not allowing PI to hold me back has also helped me to know I can accomplish anything I like, even if I’m not perfect.” Not many people—of any age—are so accepting of themselves and able to tune out doubt and criticism. This level of poise and confidence is a sure sign of only great things ahead for both girls.

Some kinds of exercise are not recommended for patients with specific primary immunodeficiencies. Check with your doctor regarding appropriate types of exercise.

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