MOD 7

Notes from the Field

Learning Guide

You must read the required reading for this MOD first and then, after finishing that reading, move on to the required videos to watch (below), required websites to explore (below), and any required supplemental reading (below).

Welcome to MOD 7

Mast cell activation related issues and disorders (such as long COVID, being sensitive to multiple chemicals, MCAS, POTS, fibromyalgia, irritable bowel, and more) are not new. Mast Cell Activation Syndrome (MCAS) is not new. These are health issues that have been around for decades. The individuals who suffer from these health conditions, due to the medical need for avoidance and other realities associated with these disorders, historically have been marginalized and left at the fringes. They are a group of people whose voices were silenced through misdiagnoses, lack of understanding, and lack of knowledge.

About the Required Reading:

Notes from the Field is a collection of personal experiences. It offers a unique opportunity to hear about what having a mast cell activation disorder is like from people who are living with them.

Through short stories, prose, and poetry, they share their truths and the reality of life with a systemic mast cell disorder.

About the Required Website:

Mast cell activation related issues and disorders affect people globally. Mast Cell Action, a UK nonprofit, offers many important resources on their website. The required website reading is their “Patient Stories” section. You are required to read all the patients’ stories.

About the Required Supplemental Reading:

The supplemental reading is an article about the patient experience of having a mast cell activation disorder. It was published in 2012 by Mastocytosis Canada. Although we have made many positive strides in understanding mast cells and mast cell activation, especially since the COVID-19 pandemic and long COVID, the article captures the reality of the lived experience of people living with mast cell disorders in a way that is equally as true today.