Kim Lepine

I was introduced to the uniquely challenging world of rare disease when I was diagnosed with systemic mastocytosis in 2024. My diagnosis journey dramatically began with a near-death anaphylaxis that was not recognized by the medical community due to its atypical presentation. Left without answers after months of hospitalizations, my self-advocacy emerged out of desperation. With 15 years of experience as a nurse under my belt, I feel that my diagnosis story has given me a purpose in encouraging others to fight for a better quality of life with SM. My experience has brought light to the all encompassing weight of rare disease, and I hope that sharing my experiences will resonate with the members of this community and offer validation to those who are struggling. I reside in beautiful British Columbia, Canada, as a wife of 20 years to my high school sweetheart and a proud border collie mom.