Watch Scott, a PNH patient, talk about being proactive with his disease.
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.
- Talk to your doctor, read any information your doctor provides, and ask questions to stay informed and learn about your options
- Visit PNHSource.com regularly
- Join OneSource™, a program designed to provide
you with personalized support and disease information from a nurse case manager
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 is life-threatening, but PNH can be managed.
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.
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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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.