The story of Taylor
After giving birth to my baby, I triggered an idiopathic rare disease called Atypical Hemolytic Uremic Syndrome. It caused a cascade of life-threatening issues including kidney failure, heart failure, sepsis, pneumonia, and clots all over my body including my kidneys, heart, lungs and pelvis.
After five weeks in and out of the ICU on a ventilator three times, four abdominal surgeries, facing sepsis, pneumonia, and uremia, I survived and came home to my daughter. Coming home wasn’t simple, involving a tsunami of doctor appointments, physically unable to walk or pick up my child, and hours dialysis every other day.
Two years later, I’m an active mother, working, and I’m managing my rare chronic disease with a very powerful infusion. In this time I learned a great deal about healing, getting the care you need, understanding the body, and how to parent under incredibly challenging circumstances.
I started a Substack called Rare Disease Girl and an article I published two weeks ago in the Huffington Post on tips for patient advocacy went viral to #1 in Apple News. While my experience is rare, it resonates with all. Being a patient is part of the human experience and my goal is to help everyone to feel empowered to get the best care possible.