From an early age, I suffered from frequent infections. It spite of being a high achiever, I was often bullied and my absences treated with skepticism.  I persevered, married, got a masters in social work, had two children and wrote when I could.  Then, I was diagnosed with thyroid cancer and had a severe reaction to radioiodine treatment, leaving me more vulnerable to infections and compounding my illness. Finally, after years of medical visits and other diagnoses along the way, I was diagnosed with Primary Immune Deficiency—the “Bubble Boy Disease.”  Primary Immune Deficiency (PI) is a group of more than 300 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly.  People with PI live their entire lives more susceptible to infections–enduring recurrent health problems and often developing serious and debilitating illnesses. The Immune Deficiency Foundation is dedicated to improving diagnosis, treatment and quality of life of persons with PI. There are approximately 250,000 people diagnosed with PI in the U.S., and thousands more, like me, go undetected for years.  So, I am dedicating this Virtual March to those with PI and others who suffer from rare, debilitating illnesses.  We are vulnerable not only because of our disease, but because we need expensive, life-long medical treatment. Without the protections established under the Affordable Care Act, individuals like me with PI will not have access to the care we need to live our most productive lives. I live each day with much pain, fatigue and a host of other symptoms.  But, marches such as these give me hope that though I am absent in body, I will not be forgotten and marginalized. My voice will be heard and you will count me as your sister in our struggle for dignity, equality and acceptance.

Biographical Statement:

Suzanne McDonough is a writer and former therapist with a masters in social work who focuses on Primary Immune Deficiency (PI) and other aspects of chronic illness.  She supports the Immune Deficiency Foundation (www.primaryimmune.org) and is hard at work on a new blog entitled “Primary Directives” (www.primarydirectives.com).

Dark haired woman, smiling and wearing a tiara