Learn About Paroxysmal Nocturnal Hemoglobinuria (PNH)

PNH can lead to blood clots, chronic kidney disease, lung problems, and fatigue

Start Learning—and Change the Way You See PNHA disease where red blood cells are created without a protective protein. This causes them to burst (a process called hemolysis) and can result in serious health problems. Signs and symptoms include stomach pain, difficulty swallowing, anemia, shortness of breath, and fatigue. Life-threatening complications from PNH include blood clots, kidney failure, and damage to organs.

  • PNH is serious. It starts with your blood, but it can affect your entire body1
  • PNH is dangerous. If you don’t take care of PNH, it can lead to serious health problems, including some that can be life-threatening1
  • PNH is constant. Even though you can't see it, hemolysisThe destruction of red blood cells by complement, a part of the body’s natural defense system. Hemolysis is the main cause of the signs, symptoms, and serious health problems in PNH, including some that are life-threatening. is always happening2,3
  • PNH is treatable. In fact, treatment is vital. And there are options. Speak with your doctor to find out what's right for you4,5

If left unaddressed, PNH can lead to:

  • Blood clotsBlood clots form when parts of your body’s blood clump together. In a healthy body, this can stop bleeding when you’re cut or injured. But in certain conditions, these clumps can block blood flow in the veins and arteries, which can be dangerous. In PNH, a clot can happen at any time and can cause serious health problems. can block veins and arteriesBlood vessels that carry blood from the heart to the rest of the body. and lead to heart attackDamage to an area of the heart muscle that is deprived of oxygen, usually due to a blood clot in the coronary artery. Heart attacks are serious and can be fatal., strokeRapid loss of brain function due to a lack of blood supply to the brain, as a result of a blood clot or ruptured artery in the brain. Strokes can be life-threatening., and organ damage, as well as other problems6-8
  • Chronic kidney diseaseThe gradual loss of kidney function over a period of months or years. Your kidneys have the important job of filtering your blood. When they don’t work right, waste builds up in your blood and makes you sick. occurs in almost 2/3 of people with PNH9
  • Lung problems occur in almost 1/2 of patients with PNH. They can be caused by pulmonary hypertensionHigh blood pressure in the arteries that deliver blood to the lungs. This means that blood has a hard time getting to the lungs, causing your heart to pump harder.. This can lead to shortness of breath and other serious health problems10
  • FatigueTiredness, trouble concentrating, dizziness, and weakness to the point where even normal, everyday activities become a struggle. In PNH, fatigue is often out of proportion to the amount of anemia, as measured by hemoglobin, because it is affected by hemolysis. due to hemolysis. Hemolysis affects the way oxygen gets delivered throughout your body. This can make you feel weak and tired to the point where once-normal, everyday activities become a struggle2,4,11

Click on a word that is underlined with a light dotted line and an explanation of that word will appear.

PNH Patient Victor video

Hear Victor, an actual PNH patient, discuss how he learned he had PNH.

PNH Expert Doctor Farber video

Listen as Dr. Charles M. Farber, a specialist of blood and blood diseases, explains how blood clots affect someone with PNH.

PNH Patient Scott video

Watch Scott, a PNH patient, talk about being proactive with his disease.

References: 1. Brodsky RA. Blood Rev. 2008;22:65-74. 2. Rachidi S, Musallam KM, Taher AT. Eur J Intern Med. 2010;21:260-267. 3. Rosse WF. In: Hoffman R, Benz EJ Jr, Shattil SJ, et al, eds. Hematology: Basic Principles and Practice. 3rd ed. New York, NY: Churchill Livingstone; 2000:331-342. 4. Borowitz MJ, Craig FE, DiGiuseppe JA, et al; for Clinical Cytometry Society. Cytometry Part B. 2010;78B:211-230. 5. Hillmen P, Muus P, Röth A, et al. Br J Haematol. 2013;162:62-73. 6. Hillmen P, Lewis SM, Bessler M, et al. N Engl J Med. 1995;333:1253-1258. 7. Socié G, Mary J-Y, de Gramont A, et al; for the French Society of Haematology. Lancet. 1996;348:573-577. 8. Nishimura J-I, Kanakura Y, Ware RE, et al. Medicine. 2004;83:193-207. 9. Hillmen P, Elebute M, Kelly R, et al. Am J Hematol. 2010;85:553-559. 10. Hill A, Rother RP, Wang X, et al. Br J Haematol. 2010;149:414-425. 11. Meyers G, Weitz I, Lamy T, et al. Blood. 2007;110: Abstract 3683.