“Some days we’re absolutely fine… and then it can go polar opposite.”
Unnoticeable. Unmistakable.
From early symptoms to diagnosis
Olivia is 11 years old and lives in the UK. Her mother, Charlotte, first noticed spots appearing on her skin when she was just a few weeks old. After months of uncertainty, Olivia was diagnosed with urticaria pigmentosa at six months old. A bone marrow biopsy at age six later confirmed indolent systemic mastocytosis.
At just three years old, Olivia experienced her first episode of anaphylaxis after exposure to an air freshener. Since then, she has experienced recurrent anaphylaxis, with triggers including heat, cold and viral infections. Some episodes have no identifiable trigger.
Living with the unpredictable
Charlotte describes the unpredictability of life with mastocytosis. Some days Olivia can attend school, enjoy clubs and spend time with friends. Other days, her condition makes even leaving the house impossible.
She also highlights the challenges of recognising anaphylaxis, as Olivia’s reactions do not involve the swelling that some people expect.
Olivia’s story is a reminder that living with mastocytosis can be unpredictable, with challenges that aren’t always visible to others.
Every story matters. Share yours.
Like Olivia, many people living with mastocytosis, MCAS and other mast cell diseases face challenges that others may not see or understand.
By sharing your experience, you can help raise awareness, build understanding and remind others that they are not alone.
Your story deserves to be heard.
