In this video, Shelby Cole shares her experience living with narcolepsy type one with cataplexy, a chronic neurological disorder that affects the body’s ability to regulate sleep and wake cycles.
Christina's Story: Desmoid Tumor
In this video, Christina, an artist, educator, and self-described "accidental advocate," shares her experience living with a desmoid tumor, a rare, locally invasive soft tissue tumor that forms in the body's connective tissue and is also known as aggressive fibromatosis or desmoid-type fibromatosis. She describes the uncertainty of her initial diagnosis, the multiple treatments that did not work, and finding a therapy that has helped keep her tumor stable.
Christina shares her story during Desmoid Tumor Awareness Month to build understanding of this rare disease. She reflects on the importance of seeing a sarcoma specialist and seeking a second opinion, and on the role managed care professionals play behind the scenes in making treatment accessible and easier to navigate. Eight years after her diagnosis, she has embraced a new normal, one that looks different but is no less joyful or worth living.
This video is sponsored by SpringWorks Therapeutics.
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In this video, Jessica of Chadds Ford, Pennsylvania, shares her journey living with eosinophilic esophagitis (EOE), a chronic inflammatory condition that causes difficulty swallowing and food impactions. After years of symptoms that were initially treated as acid reflux, a biopsy finally confirmed her diagnosis.
Meet Troyce, who shares her story of living with hereditary angioedema (HAE). Troyce discusses the dangers of delayed diagnosis, the impact of living with a life‑threatening condition, and how access to treatment and community support changed her life.
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