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Living With PNH

Take an active role in managing your PNH

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

PNH patient portrayal

Know your numbers

Some blood tests  can give you and your doctor important information about your PNH.

  • Regular testing of your  lactate dehydrogenase (LDH)  level is an important part of monitoring PNH. It may give you and your doctor an idea of how much  hemolysis  is going on in your body

PNH patient portrayal

Track your signs, symptoms, and lab results

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 Health-Related quality of life. 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.

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

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.

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.