Meet Bill

Diagnosed with PNH at 28 years old

In 1985, Bill had already been living with aplastic anemia for 10 years when chronic bouts of fatigue during exercise landed him in the hospital, where he was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH). At the time, very little was known about PNH, a rare, life-threatening blood disorder in which uncontrolled activation of complement, a component of the normal immune system, leads to chronic hemolysis (destruction of the red blood cells).1,2 In fact, Bill was only the second patient at his hospital to be diagnosed with the disease.

Bill, diagnosed with PNH at 28 years old, with his wife

In addition to severe fatigue, Bill experienced stomach pain, kidney pain, dark urine, and dysphagia (difficulty swallowing). His symptoms made it difficult to eat and sleep. Soon, Bill became dependent on regular blood transfusions, which made day-to-day life all the more challenging. Still, as a married father of 3 with a demanding job, he pushed through each day and did his best to live life without focusing on his illness.

Bill, diagnosed with PNH at 28 years old

After years of managing his symptoms as best he could with blood transfusions—and periodic hospitalizations—Bill learned about a then investigational therapy that was undergoing clinical trials. He successfully enrolled in one of the trials in 2005 and soon began to see improvements in his symptoms. He remains on treatment today.

Bill and his wife Nancy are now enjoying their retirement years and looking forward to what life with their 3 grown children will bring. As Bill says, “I’ve got one life to live and I’m going to live it to the fullest.”


  1. Hill A, Richards SJ, Hillmen P. Recent developments in the understanding and management of paroxysmal nocturnal haemoglobinuria. Br J Haematol. 2007;137(3):181-192.
  2. Hillmen P, Lewis SM, Bessler M, Luzzatto L, Dacie JV. Natural history of paroxysmal nocturnal hemoglobinuria. N Engl J Med. 1995;333(19):1253-1258.