Meet Ruthie

Diagnosed with PNH at 28 years old

Ruthie was a typical college senior at the University of Georgia in 1996 when she began experiencing chronic fatigue and frequent headaches. She initially chalked it up to long nights and not getting enough sleep, but eventually visited the campus clinic when her symptoms became severe. After reviewing her lab results, the clinic advised her to see an oncologist at a local hospital in Athens.

Ruthie, diagnosed with PNH at 28 years old, with her husband

At first, Ruthie was misdiagnosed with leukemia and then with aplastic anemia. She initially received treatment for aplastic anemia, but her condition deteriorated over the next few months. Finally, in 1999, Ruthie was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH)—a rare blood disorder in which uncontrolled activation of complement, a component of the normal immune system, leads to chronic hemolysis (destruction of the patient’s red blood cells).1,2

Ruthie, diagnosed with PNH at 28 years old, with her family Ruthie, diagnosed with PNH at 28 years old, with her husband

By then, Ruthie was married with a newborn son, and she and her husband were scared to learn that PNH was a life-threatening illness that at the time had no approved treatments. Ruthie first learned about an investigational therapy to treat PNH while it was in clinical trials and began treatment shortly after it was approved. Today, Ruthie continues to receive treatment and has the energy to be an engaged and involved mother to 3 active kids.

As her husband David notes, “In the beginning, we didn’t know how long Ruthie would be around, but today I’m excited for our children and for our future.”


  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.