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I'm 36 years old — and a mother of 3. I've had PNH for 18 years. This is my story. |
Margarita tried to maintain a normal life because she didn't want to give in to the disease. But her constant fatigue and fainting spells soon left her with no choice but to leave her job. And keeping up with her three children was almost impossible.

It was like living on a planet with half the oxygen and twice the gravity. Even worse, she feared she wasn't doing her best as a mother. Though her children knew she was sick, she still felt guilty whenever she found herself in the hospital, missing holidays, birthdays, and vacations — and being away from her loved ones.
Adding to her feelings of isolation, she could no longer travel to Puerto Rico to visit her family. Constantly out of breath, even a walk around the block would leave Margarita desperately looking for a place to sit down. Everyday chores became monumental tasks. Margarita would have to stay in her car while her daughter shopped for groceries. Even doing the laundry required energy that she just didn't have as a result of her PNH.

Margarita's social life was nonexistent. With her frequent hospitalizations and constant exhaustion, she had no time — and no energy — for having fun with her friends, or even going out to dinner with her family.
PNH wasn't just claiming Margarita's health, her energy, and her vitality, it was taking away her identity. All the things that defined her — family, friends, hobbies — were no longer a part of her life.
It was only when her hematologist contacted her about a clinical study being conducted for a new drug called eculizumab (now known by its brand name, SOLIRIS®), that Margarita would reclaim her life from PNH.