By Imani, PNH, United States, March 2, 2018
My name is Imani. I am 14 years old and was diagnosed last November with a very rare blood disease called PNH. I got very sick in October and had a nose bleed that lasted for over 2 hours. My mom took me to the ER where they ended up cauterizing my right nostril to stop the bleeding. I went home but the very next day my left nostril started bleeding. This time I passed out and had to be transported by an ambulance back to the ER. I was hospitalized for two weeks while the doctor tried to find out what was wrong with me. He thought I had just contracted a horrible virus that was attacking my blood cells. Finally one test out of many taken came back positive and that was the PNH test. Since being diagnosed I have had weekly visits to the hospital for blood and platelet transfusions. I am currently doing immunosuppression therapy and taking lots of meds right now. I am not able to return to school just yet but I am hoping the doctor will clear me in the next month or so, so I can finish out my last year of middle school.