I am marching virtually in honor of those of us who are challenged by Primary Immunodeficiency (PI) and other rare, chronic illnesses. 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. There are approximately 250,000 people diagnosed with PI in the U.S., and thousands more, like me, go undetected for years. We are vulnerable not only because of our disease, but because we need expensive, life-long medical treatment. Without the protections established under the ACA, Medicaid and Medicare, 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.
Image: a woman with brown hair and bangs wearing glasses, a pink pussy hat, and a paper breathing mask