NORD is proud to share this patient story in recognition of Rare Cancer Day 2023. Learn about Rare Cancer Day here.
At 8 years old, Jenny was diagnosed with Familial Adenomatous Polyposis (FAP), a rare, genetic precancerous condition. Living with FAP means you will develop cancer at some point in your lifetime, which makes early diagnosis and preventative treatment crucial. FAP causes hundreds to thousands of polyps to develop in the colon. Despite its seriousness, the condition is so rare that many doctors and specialists are unfamiliar with the disease.
At age 9, Jenny had a temporary ileostomy and multiple subsequent surgeries, which led to the development of a second rare disease, Short Bowel Syndrome. Thankfully, when we first met Jenny in 2015, her health was stabilized, she had graduated with a master’s degree and was working full-time, and she was eager to help others living with rare diseases.
A lot has changed for Jenny and her family over the years. She and her mother are the last survivors in their family with FAP. What began as a fundraiser in celebration of Rare Disease Day has turned into a nationwide effort to help others navigating chronic illness. As a volunteer, Jenny started the NORD FAP Research Fund to drive research and awareness, authors a blog called Life’s a Polyp, wrote a children’s book for kids to learn about FAP (“Life’s a Polyp with Zeke and Katie”), and provides one-on-one support to other FAP patients and caregivers.
As part of her advocacy efforts, Jenny is working with NORD to establish a Rare Disease Advisory Council (RDAC) in Oklahoma where she lives, and at last month’s Cherokee Nation OKC Annual At-Large Meeting, she spoke with the Principal Chief and the First Lady about creating a rare disease committee to recognize FAP and other rare diseases.
Jenny’s medical experience led her to become a rare disease advocate and she finds purpose in helping others not have to go through the same medical and mental health experiences she had as a child. With rare diseases, like many things, she believes we are stronger together than we are apart. Connecting with others, both in person and through online communities, has helped her to learn self-acceptance of her medical conditions and how they’ve impacted her life, along with the importance of self-advocacy to receive the medical care she needs.
On Rare Cancer Day, you can help people living with rare cancers live longer by making a donation to ensure that every person will be healthy enough to share a story about their own progress. Consider donating to Jenny’s FAP Research Fund here.
