Stories of strength

The story of Anna

At Sobi, we are committed to supporting people living with paroxysmal nocturnal haemoglobinuria (PNH) – a rare blood disorder - throughout their lives.¹

Living with PNH can be a challenge, but support, understanding and quality information may help people find unknown strength.²

Anna’s fictionalised story is inspired by a real person living with PNH. For Anna, there were days when a positive future felt out of reach. However, she said, “I was never alone. With the support of my doctors, friends, and family, I found an unknown strength and joy has returned to my life.”

¹Dingli 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.

²Everyday 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/

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.

¹Panse 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

²Bektas 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

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

⁴Everyday 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

The story of Paul

A diagnosis of Paroxysmal Nocturnal Haemoglobinuria (PNH) can change the lives of people after diagnosis.¹

But, with information, understanding and support, people living with PNH can adapt and a can adapt and manage their condition better.²

Paul’s fictionalised story is inspired by a person living with PNH. After his diagnosis, Paul imagined his career dreams were over. But with the support of his healthcare team, friends and family, each day has taken him further away from the crisis of diagnosis and closer to a more balanced life