Navigating a Rare Disease: Sarah's Story
In recognition of International Rare Disease Day (Feb. 28th), Sarah shares her journey with Hairy Cell Leukemia. Sarah, a mom of two, was diagnosed with HCL four and a half years ago in her small town in Michigan. When diagnosed, Sarah says her biggest challenge was the fear of the unknown. She researched everything she could surrounding HCL and was grateful to learn that HCL is a treatable disease with a near normal life expectancy.
There are helpful communities, like the Hairy Cell Leukemia Foundation, that support patients with rare diseases by providing key information to keep you informed. Don't be afraid to ask questions.
Sarah emphasizes the importance of HCL patients advocating for themselves. Residing in a small town, Sarah was unsure if her local hospital could effectively treat her rare disease. She found an oncologist she trusted, but she also thoroughly researched HCL and its treatments on her own. She went to her appointments with a notebook in hand and was upfront with all of her questions.
Find the experts in your rare disease's field of study and connect them with your local clinician. A small-town oncologist may treat only five HCL patients in their career. As a patient advocate, you may need to bridge the gap.
When diagnosed with a rare disease, a patient will most likely have a long-term relationship with their oncologist. Sarah reassures others that it is acceptable to have high expectations when it comes to treatment plans and to inform your oncologist if you want to go in another direction. She advises others to not be afraid to switch doctors or to get a second opinion if desired.
Even though Sarah lives in a small town, she is grateful to have her friends and family as a strong support system. Sarah stresses the importance of connecting with others on a personal level and encourages individuals with HCL to share their stories. Having that connection and support can ease the anxiety that many patients may face.
Family and friends may be more scared for you because (your rare disease) is unknown. The best support from family and friends is when one listens.
During Sarah's journey, reading other people's stories and relating to other moms with HCL helped reassure her. She hopes that sharing her story can help others feel less alone.
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Author Information
We gratefully acknowledge the work of Kuyili Velagapudi, Spring 2022 Communications Intern. Kuyili is a Public Health and Communication Studies student at The College of New Jersey.
Photo description: Sarah hiking with her daughter in Northern Michigan about 3 years after treatment. Hiking is an activity that sustains her and her family.