ALLOUEZ, Wis. (WFRV) – “You never know when somebody is coming up to you, what they are going to say or how they are going to say it,” said Carol Shroyer. Carol and her husband James have a daughter, Jenny Shroyer, who is living with Neurofibromatosis.
Commonly referred to as NF, it causes tumors of various sizes and shapes on nerve endings. When the family watched the story on Mackay Campbell, who is 14-years-old living with Lymphatic Malformation, they reached out to Local 5 News to tell their story.
“I liked Mackay’s story. It really did show that people are different and that we are created differently,” said Jenny Shroyer. Jenny, who is 28, has had NF since before she was born. The condition has a 50/50 chance of being passed down from a parent. Jenny’s father James, also has NF. “I feel guilty, but she’s still my daughter and I love her,” said James. According to James, he is the only one in his family to have this rare condition. “I have it on my face and on my hands, I’ve had some surgically removed. They can however grow back,” said James.
There have been some challenges for both James and Jenny especially growing up. Both were subject to bullying because of their physical condition. They are also slightly developmentally disabled, but that has not stopped either from working. “I was bullied because of the way that I look, and it hurt, “said Jenny. She says that she also had a close circle of friends who have had her back through it all.
For Carol Shroyer, it was difficult to find a doctor for Jenny’s care in the Green Bay Region. “We ended up going to the Mayo Clinic in Minnesota because they have an NF doctor who specializes in it. It’s more on the genetic area and how Jenny feels when she goes there is that she doesn’t have to explain what NF is,” said Carol.
Jenny’s intention for doing the interview with Local 5 is simple, no judgment especially based on appearance. “I hope that people will raise awareness for NF and let people know that just because you look different, doesn’t mean I technically am different,” said Jenny. Participating in a Mayo clinical trial for new treatments for NF, Jenny hopes there will be a breakthrough soon on the cause and how to properly treat NF. There are various forms of NF and to find out more information, visit the Mayo Clinic’s website here.