Our History
Notes From Founder: Barbara Evans Forss
The History of LadyBugs, LLCTM
In 1998 at the age of 47, I was diagnosed with a rare, hereditary bleeding disorder called F-VII (Factor 7) Deficiency. Three members of my family died at a young age from cerebral bleeds, and I had been hospitalized or seen in the Emergency Department over 50 times with bleeding episodes and complications. I'd also received many units of blood and blood products such as cryoprecipitate and fresh frozen plasma. Yet my doctors implied that I couldn't have hemophilia, even though I bled as if I did. All because I was a female, and we're "supposed" to bleed.
My undiagnosed disorder caused me years of pain, unnecessary surgeries, a hysterectomy at age 31 (to stop the bleeding), missed days at work, and often depression and fear that I might actually be dying. The "not-knowing" complicated every aspect of my life at that time. Years of misdiagnosis and lack of proper treatment were taking their toll emotionally as well as physically. I felt alone, isolated, and sick of bleeding all the time.
Shortly after my diagnosis, I met other women who were activists in the community, and who were instrumental in "kick-starting" my advocacy. We shared many symptoms and feelings of frustration. The empowerment that came from these associations helped me realize that I needed to become involved in my own health care, and also continue these relationships with other WWBDs. They made me feel...normal!
I began networking with these new-found friends, other women who had experienced what I did. We e-mailed, phoned, or chatted at conferences. It didn't matter if we had VWD or a factor deficiency or a rare bleeding disorder, we all bonded easily.
From these relationships came the idea of a national support group for women with bleeding disorders, LadyBugs,LLCTM.
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