The story of Kim
I went my entire adult life feeling like something was wrong with me even though I appeared to be in peak performance. I looked great but never understood why at times I felt so fatigued, my head felt full of cotton balls, and my bones ached so deeply. I always flushed red so easily but I waved it off as sensitive skin or hormones. I felt as though I couldn’t complain because I’m young and fit so I allowed this “wrong” feeling to go for years until one day I just collapsed without warning. I woke up in the ICU to discover that I had managed to dial 911 before I collapsed and paramedics had saved my life with manual respirations and IV epinephrine. I didn’t know it for another few months but I had just survived anaphylactic shock brought on by systemic mastocytosis – I have no allergies!
Because of a gene mutation, my bone marrow creates too many immune cells, called mast cells, that are now extra reactive because of their mutation. I can experience anaphylactic reactions from emotional stress, hormone fluctuations, common medications such as NSAIDs, temperature change, many foods, and the list goes on. It took months after my anaphylaxis to find the diagnosis because it is so rare and it is hidden in the bone marrow. A tryptase blood test is what led me in the right direction after months of tests with specialists.
During those few months that my sudden collapse remained a mystery, I developed an appreciation for the rare disease community. Rare illness makes you feel left out at sea in a medical system that is not built to identify and treat rare diseases. I am so grateful to have found an incredible oncologist 1000 kms away that makes the travel feel worth doing for her validation and knowledge on how to manage my rare disease.