Veronika Grigorjeva suffers from paroxysmal nocturnal hemoglobinuria (PNH), a rare and serious disease that leads to the destruction of red blood cells, threatening her life without necessary medication.
Veronika Grigorjeva is battling paroxysmal nocturnal hemoglobinuria (PNH), an ultra-rare disease characterized by the destruction of erythrocytes, which significantly impacts her daily life and wellbeing. In patients with PNH, the immune system mistakenly attacks and destroys their own red blood cells, resulting in hemolysis, anemia, and various debilitating symptoms such as fatigue, weakness, and shortness of breath. Without appropriate treatment, the disease can escalate to potentially life-threatening conditions.
Due to the rarity of PNH, Veronika knows of only one other patient, a male who is also under the care of hematologist Elza GrinΔuka. Despite not being classified as a cancerous condition, PNH poses significant dangers and fears for those diagnosed. The challenges associated with the illness extend beyond physical health, deeply affecting the psychological and emotional wellbeing of patients, who often find themselves isolated due to the lack of awareness and shared experiences.
The narrative sheds light on the struggles of those with rare diseases and the critical role that specific medications play in managing their conditions. It emphasizes the need for greater awareness, research, and support for patients with PNH, as their lives depend on accessible and effective treatments to ensure their survival and quality of life.
