Live With PNH

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. is serious, but a lot is known about the disease, and it can be managed

PNH patient portrayal

PNH is a serious disease, and living with it can be scary. You may feel lost and alone. But with the right tools and support, you can take control.

Stay informed

  • Talk to your doctor, read any information your doctor provides, and ask questions to stay informed and learn about your options
  • Visit regularly
    • Find information in Learn about PNH on the disease—what it is, how it works, and how you’ll be tested for it
    • Use Patient Resources, which will keep you up-to-date on PNH support programs and events
  • Join OneSource™, a program designed to provide you with personalized support and disease information from a nurse case manager

Know your numbers

PNH patient portrayal

Some blood testsA test done to look at parts of the blood. Examples of tests include complete blood count (CBC), LDH, and high-sensitivity flow cytometry. Results from these blood tests provide information about your PNH. can give you and your doctor important information about your PNH.

  • Regular testing of your lactate dehydrogenase (LDH)An enzyme found in red blood cells, released during hemolysis. Testing for LDH can help show how much hemolysis is happening in your body. level is an important part of monitoring PNH. It will give you and your doctor an idea of how much 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 going on in your body1

Your doctor will also order a complete blood count (CBC)A lab test that measures and evaluates several components and features of your blood, and detects a wide range of disorders. that includes:

  • Red blood cell (RBC)A type of cell found in your blood that delivers oxygen and removes waste (carbon dioxide) in your body. Red blood cells affected by PNH are attacked and destroyed because they are missing a protective protein. count: RBCs deliver oxygen and remove waste from your body2
  • White blood cell (WBC)A type of cell found in your blood that helps your immune system fight disease and infection. count: WBCs protect the body from infection2
  • Hemoglobin (Hgb)The oxygen-carrying, reddish-brown material found inside red blood cells. When it is released into the bloodstream during hemolysis, it becomes free hemoglobin. Free hemoglobin is harmful and can lead to serious health problems. level: Hemoglobin inside your RBCs carries oxygen throughout your body. Low levels of hemoglobin can cause anemiaThe condition of having a lower-than-normal number of red blood cells or quantity of hemoglobin. Anemia diminishes the capacity of the blood to carry oxygen., which can make you feel weak and tired. In PNH, 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. is often out of proportion to the amount of anemia due to the effects of hemolysis2

PNH can be life-threatening.3-5 But with the right treatment, people with PNH can live long, full lives. It’s important to start treatment early—and aggressively. By working closely with your doctor, you may be able to keep the risks of PNH at bay.

Track your signs, symptoms, and lab results

PNH patient portrayal

Your signs and symptoms, combined with lab results, give you and your doctor the full story of your PNH. And although you can’t always see or feel them, they can lead to serious health problems.5,6 Tracking the ones that you are aware of, over time, will help you and your doctor become more aware of changes in your health.

The changes in how you are feeling can be so gradual that you don’t even notice them. You forget what your life was like before PNH and come to accept your current lifestyle as “normal.” That’s why, in addition to tracking signs and symptoms, it’s important to create a record of your normal, everyday activities before you had PNH and to track changes in your lifestyle over the course of your disease and treatment.

You might find that PNH affects your quality of life.3 It might affect your ability to walk short distances, work regular hours at your job, make it to doctors’ appointments, or even attend family functions. Work closely with your doctor to reduce the impact of PNH and to get the most out of your life. Don’t be afraid to ask friends and family for help.

Remember, take note of how you’re feeling and share it with your doctor, and always contact your doctor right away if you have any sudden changes to your health.

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

PNH Patient Scott video

Watch Scott, an actual PNH patient, talk about the diagnosis of his disease.

Lab Tracker Tool

Download the Lab Tracker to stay in the know with your lab results. It will help give you and your doctor the full story of your PNH.

OneSource support

Contact OneSource and get personalized support and information to help you manage your PNH.

References: 1. Lee JW, Jang JH, Kim JS, et al. Int J Hematol. 2013;97:749-757. 2. Rother RP, Bell L, Hillmen P, et al. JAMA. 2005;293:1653-1662. 3. Rother RP, Rollins SA, Mojcik CF, et al. Nat Biotechnol. 2007;25:1256-1264. 
[Published correction appears in Nat Biotechnol. 2007;25:1488]. 4. Brodsky RA. Paroxysmal nocturnal hemoglobinuria. In: Hoffman R, Benz EJ Jr, Shattil SJ, et al, eds. Hematology: Basic Principles and Practice. 4th ed. Philadelphia, PA: Elsevier Churchill Livingstone; 2005:419-427. 5. Rachidi S, Musallam KM, Taher AT. Eur J Intern Med. 2010;21:260-267. 6. Borowitz MJ, Craig FE, DiGiuseppe JA, et al; for Clinical Cytometry Society. Cytometry Part B. 2010;78B:211-230.