Alexandria Fiorenza Vale Publishes Memoir at 34 After 3-Year Fight for MCAS Diagnosis
Updated
Updated · SILive.com · Jul 12
Alexandria Fiorenza Vale Publishes Memoir at 34 After 3-Year Fight for MCAS Diagnosis
2 articles · Updated · SILive.com · Jul 12
Summary
Alexandria Fiorenza Vale, 34, has published a memoir on living with Mast Cell Activation Syndrome after years of life-threatening flareups that began with an allergic reaction at 26 and led to a 10-day hospital stay.
Three years passed before Vale received the correct diagnosis for the rare immune disorder, which can trigger hives, abdominal distress, breathing trouble and anaphylaxis when mast cells release too many chemical mediators.
Daily life remains unpredictable because triggers can include fish, flowers, cleaning products, nuts and fruit, while treatments are trial-and-error and the disease has no cure.
Vale said carrying an EpiPen has saved her life multiple times and argued patients should not have to fight insurers for coverage of a medication they may need repeatedly.
Through 4 years volunteering with the Mast Cell Disease Society, Vale said she hopes the book will reduce the isolation of invisible illness, raise awareness and push for better treatments and eventually a cure.