A rare disease blog || life with paroxysmal nocturnal hemoglobinuria
WHAT IS PAROXYSMAL NOCTURNAL HEMOGLOBINURIA
Paroxysmal nocturnal hemoglobinuria (PNH) is a rare blood disease. PNH causes a patient's blood to break down due to missing proteins on the patient's blood cells. PNH can cause patients to have low blood counts (anemia), blood clots, pain, and dark urine as well as other symptoms. This is the very short description of PNH. It is rare and it is complicated.
The following links will provide an in depth explanation of PNH as written by The National Organization for Rare Disorders(NORD) and The Aplastic Anemia and MDS International Foundation.
I encourage everyone to read and share this website with others to build awareness of PNH and help me connect with other rare disease patients.
WHO WE ARE
Hi! I’m Josh. Founder of Day Fifteen, husband, father, registered nurse, surfer, rare disease patient. Diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2014.
And I’m Kristy! Co-founder, wife to Josh, supporter, hot mess boy mama, nurse, yogi & photographer to name a few. I’m here to help. My purpose for this business is to find different ways to help support people who have chronic conditions & find ways to provide helpful support to their families!
Welcome to our beautifully chaotic little story, we're so glad you stopped by!
Thanks for your interest in Day Fifteen. Feel free to get in touch and we will get back to you as soon as we can!