Fighting PNH Every Day

What is paroxysmal nocturnal hemoglobinuria (PNH)?

PNH is a chronic, progressive, debilitating, and life-threatening ultra-rare blood disorder characterized by complement-mediated hemolysis (destruction of red blood cells).1,2 PNH can strike men and women of all races, backgrounds, and ages without warning, with an average age of onset in the early 30s.1,3

Joe, diagnosed with PNH at 24 years old, with his fiancée and child

Patients with PNH may experience a wide range of signs and symptoms, such as fatigue, difficulty swallowing (dysphagia), shortness of breath (dyspnea), abdominal pain, erectile dysfunction, dark-colored urine (hemoglobinuria), and anemia.4-10

The most devastating consequence of hemolysis in PNH is thrombosis (blood clotting), which can damage organs and cause premature death.11 Thrombosis can occur in blood vessels throughout the body, and the first thrombotic event can be fatal.2,3,12 Additionally, patients with PNH often suffer from impaired health-related quality of life.8

Symptom locations of PNH on the human body

Symptoms of PNH4-8

  • Difficulty swallowing
  • Pulmonary hypertension
  • Shortness of breath
  • Chronic kidney disease
  • Abdominal pain
  • Dark urine
  • Hemoglobinuria
  • Formation of blood clots (thrombosis)
  • Anemia
  • Fatigue
  • Erectile dysfunction


  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.
  3. Socié G, Mary JY, de Gramont A, et al. Paroxysmal nocturnal haemoglobinuria: long-term follow-up and prognostic factors. French Society of Haematology. Lancet. 1996;348(9027):573-577.
  4. Schrezenmeier H, Muus P, Socié G, et al. Baseline characteristics and disease burden in patients in the International Paroxysmal Nocturnal Hemoglobinuria Registry. Haematologica. 2014;99(5):922-929.
  5. Brodsky RA. Advances in the diagnosis and therapy of paroxysmal nocturnal hemoglobinuria. Blood Rev. 2008;22(2):65-74.
  6. Weitz I, Meyers G, Lamy T, et al. Cross-sectional validation study of patient-reported outcomes in patients with paroxysmal nocturnal haemoglobinuria. Intern Med J. 2013;43(3):298-307.
  7. Lee JW, Jang JN, Kim JS, et al. Clinical signs and symptoms associated with increased risk for thrombosis in patients with paroxysmal nocturnal hemoglobinuria from a Korean Registry. Int J Hematol. 2013;97(6):749-757.
  8. Dacie JV, Lewis SM. Paroxysmal nocturnal haemoglobinuria: clinical manifestations, haematology, and nature of the disease. Ser Haemat. 1972;5(3):3-23.
  9. Nishimura J, Kanakura Y, Ware RE, et al. Clinical course and flow cytometric analysis of paroxysmal nocturnal hemoglobinuria in the United States and Japan. Medicine (Baltimore). 2004;83(3):193-207.
  10. Parker C, Omine M, Richards S, et al. Diagnosis and management of paroxysmal nocturnal hemoglobinuria. Blood. 2005;106(12):3699-3709.
  11. Hillmen P, Muus P, Dührsen U, et al. Effect of the complement inhibitor eculizumab on thromboembolism in patients with paroxysmal nocturnal hemoglobinuria. Blood. 2007;110(12):4123-4128.
  12. Hillmen P, Elebute MO, Kelly R, et al. Blood. 2007;110:Abstract 3678.

Victor, diagnosed with PNH at 27 years old
Now I know that others can benefit from my experience and I want to be an inspiration to them.”