Advocate and Friend
Blanca Ramirez is a self-described advocate and friend to the bleeding disorders community, a role she has been passionate about for the last several years. However, this role presented itself through the course of life experience as she learned to navigate the diagnosis and treatment of herself, and again with her daughter, Cynthia.
Blanca was a child living in a small town in Mexico when she started experiencing unexplained bruises and bleeds. She used her clothing to cover the bruises, but the bleeds could not be hidden. She says, “I couldn’t have friends because they thought I was contagious. They just didn’t understand.”
Her initial diagnosis was anemia, but the nose bleeds and heavy periods eventually proved that to be incorrect. Her bleeds were so severe that she would get dizzy and weak and her biggest fear was that she would die from a bleed. There was no factor available at the time and transfusions were still the norm for treating bleeds. However, the clinic in her town did not carry blood and the closest hospital for which to receive a transfusion was nearly four hours away. She did her best to manage her bleeds and her pain. She says, “The pain is there, but I don’t really pay attention to it anymore. We women, we learn to deal with the pain.”
Some years later, her daughter, Cynthia, who was a physically active child, experienced symptoms similar to her moms, with lots of bruising and an abnormal number of nosebleeds. In 1991, when Cynthia was five years old, she was diagnosed with von Willebrand’s disease. Her family had no knowledge of this disorder and the specialists and doctors in their small town in Texas could offer them little help. They endured many nights of nosebleeds and long hours at hospitals searching for answers from doctors who had no experience in treating bleeding disorders or awareness of effective treatment. This was exacerbated by the lack of moral support they received and understanding from their community. Blanca says, “von Willebrand’s disease was affecting our lives in a critical way.”
One fateful trip to the hospital would soon change their fortune. Doctors were again baffled to find treatment and they were scheduled to spend the night in the hospital when they received a call from Dr. Howard Britton of Santa Rosa’s Children’s Hospital informing them that he was sending a helicopter to transfer them to his hospital for treatment. Blanca says, “Dr. Howard Britton was our saving angel. Our lives changed from that moment on.”