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Rebecca .. Patient Expert

Helena, Montana
Three months after my first child was born, I was diagnosed with sarcoidosis, an autoimmune disease. Although sarcoidosis spontaneously remits in many cases, I developed a chronic form of the disease in multiple organs-- my brain, heart, lungs, liver, cranial nerves, lymph nodes, and bones.... Full Bio
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Bio

Three months after my first child was born, I was diagnosed with sarcoidosis, an autoimmune disease. Although sarcoidosis spontaneously remits in many cases, I developed a chronic form of the disease in multiple organs-- my brain, heart, lungs, liver, cranial nerves, lymph nodes, and bones. Becoming chronically ill at the same time that I am learning the ropes of motherhood has been like moving to a far-away land, where nothing I knew before seems to apply. I've dubbed my new residence Chronic Town. Before I became sick, I was a world traveler, a competitive athlete, a voracious reader, and a free-lance writer. My sarcoidosis has left me looking, feeling, and acting like an entirely different person. The treatment has left me 100 pounds heavier and severely immune-compromised. Because the disease has entered my nervous system, I've lost the ability to drive, have constant vertigo, can only look at printed words for about twenty minutes at a time, and cannot care for my son in the ways I hoped and imagined I would. Nevertheless, I've never felt more alive than I have in Chronic Town. My journey is to learn to live putting one foot in front of the other, instead of running up mountains for exercise. It's learning to love my son (now five) and my husband with a ferocity that comes only with the recognition that life changes too quickly to take for granted. I hope you join me on this free trip into the weird and sometimes wonderful world of Chronic Town.