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  • • Margarita
  • • Greg
  • • Drew

My name is Margarita.

I'm 36 years old — and a mother of 3.
I've had PNH for 18 years. This is my story.

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Margarita was only seventeen when she stopped feeling like the healthy, active person she'd always been. After being diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), she stopped feeling like herself altogether. But there was a solution — and it would help Margarita feel like the vibrant, fun-loving person she had been before.

From the beginning, it was clear that something wasn't right. Margarita was too young to feel so exhausted after almost any activity. She consulted her family doctor — lab tests revealed that her levels of hemoglobin and blood volume were far below normal.

Margarita was given B12, and a whole host of other vitamins, but nothing seemed to help.

Concerned, Margarita's primary care doctor referred her to a hematologist. A blood test confirmed her doctor's fears: Margarita had PNH, a serious disease that causes blood cells to be destroyed by a process called hemolysis.¹

Then the blood transfusions started. At first it was only once every five months, but the frequency increased. Soon Margarita was receiving two units of blood almost twice a month — right around the time of her menstrual cycle. Margarita would suffer from migraines and excruciating pain in her stomach and around her liver. The pain was so bad she often had to be admitted to the emergency room, enduring yet another blood transfusion.

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