The biopharmaceutical Sobi has launched the fifth edition of the campaign "Unmask HPN," a proposal that seeks to highlight the relevance of caregivers and self-care in the daily lives of people with paroxysmal nocturnal hemoglobinuria.
The initiative, organized in collaboration with the Paroxysmal Nocturnal Hemoglobinuria Association of Spain (HPNE) and the Spanish Federation of Rare Diseases (FEDER), is framed within the commemoration, this Monday, October 12, of the International Day of this pathology. The campaign reminds that the disease is defined by the destruction of red blood cells, a process that can lead to anemia and thrombosis.
As a reference, it is indicated that the estimated prevalence is between 0.5 and 1.5 patients per million inhabitants worldwide. In these cases, it is essential to monitor levels of lactate dehydrogenase (LDH), an enzyme that enters the bloodstream when red blood cells are destroyed. Thus, high LDH values may reflect greater HPN activity, while figures within normal range are related to better clinical control and a decrease in the risk of certain complications.
"With 'Unmask HPN,' we want to make visible the reality of living with the most characteristic symptoms, something that should not be assumed as inevitable," explained the Director of Access and Institutional Relations of Sobi Iberia, Beatriz Perales, who added that "promoting dialogue with the hematologist, monitoring symptoms, and a multidisciplinary approach can improve the patient's experience and help prevent long-term complications."
Impact on daily life
The campaign emphasizes that HPN goes beyond fatigue or anemia, as it directly conditions daily routine. According to data from a recent study published in the scientific journal "Annals of Hematology," 56.7 percent of patients see their work or academic performance affected; moreover, 53.3 percent report limitations in personal and social spheres, and up to 50 percent indicate obstacles to maintaining physical activity.
For this reason, the initiative emphasizes that self-care is essential, as it facilitates the detection of functional losses —of energy, autonomy, social life, or performance capacity— and transforms them into valuable information for the care team. The goal is to prevent the person from gradually getting used to living with fewer capabilities.
"Recognizing the role of the caregiver, supporting self-care with rigorous information, and facilitating continuity of care is key for the control of the disease to translate into normality for people living with the pathology," insisted Perales, after which the spokesperson for HPNE, Carolina Martín, stated that many patients learn "to move forward with fatigue and other symptoms." In this regard, "talking about how HPN affects us at work, at home, and emotionally is part of the treatment," she asserted.
The campaign is also supported by the "Manifesto Unmasking Paroxysmal Nocturnal Hemoglobinuria," signed by Sobi, HPNE, and FEDER, which emphasizes that, with proper control, HPN can be compatible with a normalized life. In this line, it is underscored that taking care of oneself and allowing oneself to be cared for are essential elements in living with the disease.