Her Life Depends on a New Liver.

Bel prays she’ll find another donor, and feels that United States could be doing more to further awareness and education around organ donation. “You don’t have to die to give a kidney or two inches of a liver. Anyone 21 to 60 years old, with O+ blood type, can give me two inches of his or her liver and it will grow into a full liver,” Bel explained. “The liver is the most beautiful organ in your body.” Some donors are walking 24 hours after their transplants, and scarring can be minimal.

Women are uneducated about the necessity of liver screening blood tests, Bel stressed. “The liver is your most important organ, and you don’t want to neglect it. The sooner you know your numbers are high, the sooner you can take care of yourself,” she advised.

Bel is pleased to be participating in LiveHer, a national photography and video project sponsored by Intercept Pharmaceuticals to raise awareness of PBC, and the overall importance of liver health, including routine liver blood tests. LiveHer also aims to empower and inspire patients to take control of their PBC by showcasing the real stories of Bel and two other women affected by the disease, including the courageous mother of LiveHer photographer Emily Blincoe.  

“I couldn’t find a more beautiful theme or perfect campaign because PBC primarily affects women. Women will be touched to see the videos, and hopefully they’ll feel compelled to do something,” Bel said. “The campaign might not help me, but I’ll reach my goal if I can help other women.”

Bel worries every day that her 16-year-old daughter will get PBC because a woman with the disease can pass it on to her daughter.  “I was diagnosed after I had her, and to think I was transferring this hell to my only born,” she said with immense sadness in her voice. “My daughter hasn’t had a normal life. She’s spent Christmases in the hospital with me. Now she has to help me open bottles.  I’ve been teaching her to drive so she will be able to take me to the ER in the middle of the night.”

An inspiration to any woman, Bel takes comfort in being part of an online global community of about 5,000 women with PBC, called The PBCers Organization. “You can share your symptoms and hear the stories of other women in other parts of the world, with different medical systems,” she said. “While PBC doesn’t affect everyone the same way, you can learn from others what they do to improve the quality of their lives. The liver is a sensitive organ, and when it’s sad, it becomes sour.”

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