2025 Go Red for Women Class of Survivors: Alison Conklin

At 14, Alison Conklin witnessed her mother die from the same heart condition she inherited. Despite many surgeries and tests, she needed a heart transplant. Now, she counts her bonus days and encourages others to know their own family history.

Alison Conklin was 14 when her mother collapsed on the kitchen floor. She begged her to wake up, called 911 and her father, and performed chest compressions, which she had recently learned in a babysitting class. Tragically, Alison’s mother died. She was 42.

Not only was Alison grieving, but it had only been five months since she found out she had the same condition that claimed her mother’s life. After Alison collapsed during a floor hockey game at school, her mother took her to her cardiologist, leading to their shared diagnosis: hypertrophic cardiomyopathy. HCM causes the heart wall to thicken, in turn becoming stiff and reducing the amount of blood taken in and pumped out to the body with each heartbeat.

“I was terrified because I didn't know anybody else who had a heart disease,” Alison said. “None of my friends did in school. Most of their worries were tests and relationship troubles, and I was dealing with life and death.”

Throughout her high school years, Alison continued to pass out. She underwent many surgeries and tests as doctors tried to help improve her symptoms. Finally, at age 20, her cardiologist suggested a new device — an implantable cardioverter defibrillator. The ICD would send an electric shock to her heart if a dangerously irregular heartbeat was detected, thus reducing her risk of sudden cardiac death.

After that, Alison had other surgeries to help improve her symptoms, including open-heart surgery in 2018. The surgeon removed part of her bulging heart wall to improve blood flow in a procedure known as a septal myectomy.

Managing her condition had its challenges. Alison got tired doing simple tasks like tying her shoe or making the bed. Scariest were the two times her heart went into an abnormal rhythm and her ICD went off.

Then came a routine visit to her cardiologist at age 42, the age at which her mother passed away.

“I remember going through and always feeling like I was going to have that same exact path as her,” Alison said.

During the visit, the doctor told Alison that without a heart transplant she would die within six months. Alison was in disbelief. Things went into slow motion.

Eventually, she began the testing and protocols to get on the transplant list. She also told her two adult sons she was going to try everything to be around for a long time.

“I had lost my mother when I was 14, and I knew what it was like to live without her, and I didn't want my kids to live that as well,” she said.

Alison’s condition worsened to the point she had to wait in the hospital in New York City — about two hours from her family in Emmaus, Pennsylvania. She received a heart transplant in October 2022 — after just three days on the official list.

“I always say it's like if you didn't know you needed eyeglasses, and suddenly, someday, someone put glasses on your face, and you were like, ‘Wait a minute. This is how you're supposed to see?’ That's what it feels like to receive the gift of life,” Alison said.

Today, the 44-year-old photographer stays active, walking at least five miles a day and always taking the stairs. She started a magazine called Bonus Days, an ode to all the days she’s been able to live after her transplant, for patients to look at while hospitalized. She also celebrates the small things like her son getting a good grade, going to a baseball game with her husband or waking up each day.

She counts her bonus days, writing the number on the calendar every morning. She’s at well over 700.

“My husband will see it and say, ‘Happy bonus day. I'm so happy you're here.’ And there's such beauty in saying, ‘I'm so happy you're here,’ because it can be very easy-breezy, but it also defines how hard this road has been, not only for me, but for him as a caregiver.”

The couple is grateful neither of their sons inherited the gene for HCM.

“I think it's really important to understand your family history when it comes to your health,” Alison said. “Knowing what exactly you might be up against is really important to understanding and keeping yourself healthy.”

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