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Sarah Peterson was born with a painful condition known as Neurofibromatosis Type One (NF1). This genetic disorder causes cysts to grow on nerves and on the skin. Other complications include seizures, learning difficulties, visual impairments, digestive issues, and cancer. But for those suffering from NF1, even their mental health is vulnerable.
A family struggle
NF1 has a fifty-fifty chance of being passed from a parent to their child, and these odds have not been in Sarah’s favor. “It comes from my dad’s side of the family,” explained Sarah, a front desk specialist at Kettering Health Medical Group Orthopedics. “His dad, my dad, my older sister, my middle sister, my son, and myself all have it.” Liam, Sarah’s ten-year-old son, tells people that he looks like the winking emoji because of the cyst growing on his eyelid. “He’s very accepting of it,” Sarah said. “He tells people, ‘It’s just how I was born. This is how I look and how I live.’”
For Sarah, her battle with NF1 includes having small cysts all over her body. Sarah describes having a lot of pain in her legs, knees, and back where when she’s touched, it sometimes feels like cold knives stabbing her. It can be hard for Sarah to sit or stand still for a long time, and she struggles with memory issues. Despite these challenges, Sarah said that “I have learned to handle my pain and not let it bring me down or stop me from living. I just push through it.” But Sarah had one particularly large cyst on her right side that made her struggle with her confidence. She always felt like she had to cover the cyst to avoid attracting attention.
Time for change
Sarah has a strong support system in her family. Her most significant supporter is Brian, her husband of 12 years. “He has always accepted me for who I am,” Sarah said. “He always made me feel beautiful and told me that I didn’t need to change. This is who I am.” But people can be insensitive toward her condition. Sarah said that growing up “I was put down a lot. People can be shallow.” She explained that the large cyst on her right side drew attention from others. “With it being right there on my side . . . it’s just tough.”
In May of 2021, with encouragement from her coworkers and family, Sarah felt ready to tackle the source of her insecurity: the cyst located on her right side.
Sarah was referred to Dr. Andrew Archer, a general surgeon with Kettering Health Medical Group General Surgery, to explore her options for surgery. When Sarah met with Dr. Archer, he was enthusiastic, helping her understand what removing her cyst would entail. A few weeks later, Sarah’s cyst was removed by Dr. Archer.
Sarah had her surgery on a Thursday and returned to work that following Monday. “I’m a little hardheaded when it comes to stuff like that. I like to be on the go and working.” She worked with a drain tube and couldn’t move her arms above her head, but within two weeks she felt like herself again. “I could not be happier with Dr. Archer’s work,” Sarah said. “The scar looks amazing, and I healed very well.” In the future, Sarah also hopes to have more of her cysts removed by Dr. Archer. But after this first surgery, there was another big difference with Sarah–her confidence.
Weeks after surgery, Sarah took a huge step. “For the first time in my life, I bought my first two-piece swimsuit.” Sarah was finally comfortable wearing a two-piece; she didn’t have people staring at her cyst or asking invasive questions. During the summer season, when people often grapple with how much of their body they’re comfortable showing, Sarah said that for the first time, “I felt like I was able to wear anything.”
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