Rediscover possibilities beyond your PNH that improve your daily life
People living with PNH can experience physical symptoms such as fatigue, weakness and shortness of breath, as well as cognitive symptoms such as lack of concentration that can impact daily life.1-5
This breadth of symptoms, along with regular doctor and hospital visits may limit choices in day-to-day life and affect future life aspirations.2, 6, 7
It is important that you communicate your goals and future aspirations to your doctor, so that they can work with you to find the treatment option that would be best suited for you.
It is also important that you monitor and assess any treatment option you may be taking. Speak with your doctor if you feel your current treatment option isn’t working for you, so they can work with you to find an alternative solution for you. For support with your upcoming appointment, download our guide.
1. Brodsky RA. Paroxysmal nocturnal hemoglobinuria. Blood. 2014;124(18):2804–2811.
2. Dingli D, et al. The burden of illness in patients with paroxysmal nocturnal hemoglobinuria receiving treatment with the C5-inhibitors eculizumab or ravulizumab: results from a US patient survey. Ann Hematol. 2022;101(2):251–263.
3. Meyers G, et al. Disease-related symptoms reported across and broad population of patients with paroxysmal nocturnal hemoglobinuria. Blood. 2007;110(11):3683.
4. Mitchell R, et al. Path to Diagnosis of Paroxysmal Nocturnal Hemoglobinuria: The Results of an Exploratory Study Conducted by the Aplastic Anemia and MDS International Foundation and the National Organization for Rare Disorders Utilizing an Internet-Based Survey. SM Clin Med Oncol 2017;1:1001.
5. Bektas M, et al. Paroxysmal nocturnal hemoglobinuria: patient journey and burden of disease. Manag Care Spec Pharm. 2020;26:S8-S14.
6. Dingli D, et al. Clinical Burden of Paroxysmal Nocturnal Hemoglobinuria Among Patients Receiving C5 Inhibitors in the United States. Blood. 2020;136(Supplement 1).
7. Dingli D, et al. Work Productivity Loss and Quality of Life in Paroxysmal Nocturnal Hemoglobinuria Among Patients Receiving C5 Inhibitors in the United States. Blood. 2020;136(Supplement 1):3.