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The story of Carol

A diagnosis with Paroxysmal Nocturnal Haemoglobinuria (PNH) can be life-changing.1

But PNH is treatable, and diagnosis often marks a milestone in the PNH journey.2

With the support of their healthcare team and with treatment, people with PNH can live an active life after diagnosis.3,4

Carol’s fictionalised story is inspired by a person living with PNH. Initially, she was left “torn down” by her symptoms and diagnosis, but she is now back in the gym and has regained her passion and purpose in life.

  1. Panse J, et al The burden of illness of patients with paroxysmal nocturnal haemoglobinuria receiving C5 inhibitors in France, Germany and the United Kingdom: Patient-reported insights on symptoms and quality of life. European journal of haematology vol. 109,4 (2022): 351-363. doi:10.1111/ejh.13816

  2. Bektas M, et al. Paroxysmal nocturnal hemoglobinuria: patient journey and burden of disease. Journal of managed care & specialty pharmacy vol. 26,12-b Suppl (2020): S8-S14. doi:10.18553/jmcp.2020.26.12-b.s8

  3. Meyers G, et al. Disease-related symptoms reported across a broad population of patients with paroxysmal nocturnal hemoglobinuria. Blood. 2007;110(11):3683

  4. Everyday Health. 7 Ways to Manage the Emotional Aspects of Paroxysmal Nocturnal Hemoglobinuria. Available at: https://www.everydayhealth.com/paroxysmal-nocturnal-hemoglobinuria/ways-to-manage-the-emotional-aspects