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Leila Brenner

As a woman with factor VII deficiency and hemophilic joints, Leila Brenner is unusual, but her bleeding disorder is far from the only unusual thing about her. This retired radio broadcaster surfs the internet, travels as often as she can–during one six week period she traveled to Arizona with an Elder Hostel group and to Florida with friends–and drives everywhere, even after a lifetime of ankle and elbow bleeds.

Leila was a teenager when the first case of factor VII deficiency was reported in the medical literature in 1951. But she had experienced bleeds as a child, starting when her first teeth came in. "My doctors had no idea what it was," she says. "Since I also had ankle bleeds, they called it ‘pseudohemophilia.’" At that time, factors were just beginning to be understood–factor VII had been discovered in 1949 and factors VIII and IX in the early 50s, but it wasn’t until the late 1950s that the blood clotting cascade was completely described.

Leila’s teething ended, but her ankles continued to swell from what she now knows were bleeds. Her parents took her to every doctor they could think of, finally choosing a rheumatologist. He prescribed cortisone injections to stop the bleeding and end the pain into her ankles and elbows. That remained her primary mode of treatment for more than 30 years.

As a young teenager, Leila’s first period lasted for six weeks. She was taken to the hospital and received whole blood to stop the bleeding and restore her blood counts to normal. For the next five years, Leila was admitted to the hospital every month while she waited out her periods. "Finally, I had a hysterectomy when I was 18," she says. "There was no way to lead a normal life having to go to the hospital every month." Five years later she was diagnosed with factor VII deficiency. In 1983, Leila had her right hip replaced; her left hip was replaced in 1994. In 1997, her right elbow was replaced, and she’s now considering surgery on the other elbow.

Amazingly, Leila did not meet another woman with a bleeding disorder until 1994 at NHF’s conference on women with bleeding disorders in Dallas, Texas. "Meeting other women with similar experiences was one of the most important things that’s ever happened to me. I think women need their own support networks, separate from the men." Her support has always come from friends and family, but the benefits of sharing experiences with the women she met in Dallas and those she’s met since have been tremendous.

"I’m glad that women with bleeding disorders are finally getting recognition, not just from their peers, but from doctors as well." Leila was there when factor VII deficiency was discovered, and she wants to be there when women no longer have to explain that they bleed too. She’ll probably be traveling–pain-free thanks to her surgeries–when she hears the news.

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