... from the book ...

Some of the stories in this book may apply to girls and women who are your sisters, daughters, wives, co-workers, or friends. These girls and women are in your kitchens, your classrooms, and your offices. They may be bleeding to death right before your eyes, but they are pretending to be normal so as to not make a fuss. They are part of a larger group of the population called people with hemophilia, or people with congenital bleeding disorders. Most people believe that only boys have congenital (inherited) bleeding disorders, but this is not true. These disorders affect girls, too.

My stepdaughters both were born with a rare congenital form of hemophilia called severe factor V deficiency. There was no family history; it might even have been the result of spontaneously mutated genes. There is no cure, but research has some possibilities on the horizon. Although this disorder is considered rare, many other girls and women with other types of hemophilia or bleeding disorders are living a life of hell. Their symptoms are being ignored, and they are being ignored, because our health professionals, for the most part, do not expect to see girls with bleeding disorders.

Because there is little information about girls and women with hemophilia, I decided to share our experiences. On some occasions, I brought my laptop into the hospital room to ensure I had precise data describing the situation, conversations, level of confusion, variety of events, and most important, delays in getting treatment. It was important to document what it was like for these girls as they went through a bleeding episode. For a person with a bleeding disorder, the outcome of prolonged bleeding without an infusion of something to stop the bleeding is to create more bleeding. And most people aren't aware that bleeding can cause tremendous pain.

There are both good and bad stories in this book. When all is said and done, I have these hopes for the future:

1. The medical community is more educated and informed about girls and women with hemophilia and bleeding disorders.

2. The medical community respects the need to have standing orders, or protocols, in place for people with diagnosed bleeding disorders. This will enable rapid deployment of treatment products when a bleed has been identified.

3. The medical community is aware of the impact of their decisions on the quality of life of girls and women (and their families) with hemophilia and bleeding disorders.

4. Families and support organizations, such as those dealing in home healthcare, foster care, and other caregiver services, are available to provide respite and knowledgeable caregivers for people with hemophilia and their families who need helping hands.

5. Research projects are publicized so that people can donate money or other resources toward advancements in the diagnosis and treatment of people with hemophilia and bleeding disorders. For several known studies, please see "Women's Study" in the resources section.

6. Volunteer projects are publicized to bring helping hands into the hemophilia and bleeding disorder community.

7. Businesses respect the contributions made by people with chronic illnesses such as hemophilia and bleeding disorders. Those businesses must also commit to a diverse workforce. They should offer a safe, adaptive environment for an employee who could bleed easily. They should create preventative plans to manage the work resulting from absenteeism of a person with hemophilia.

8. Mature countries and cities find a way to share their resources and technology with people in emerging countries. It is estimated that 80 percent of the people with hemophilia reside in these developing countries.

On a positive note, Project Red Flag is National Hemophilia Foundation's (NHF) public awareness campaign to reach more than two and a half million women nationwide who are believed to have undiagnosed bleeding disorders. The campaign specifically targets von Willebrand Disease (vWD), but it paves the way for awareness of girls and women with all bleeding disorders.

Hemophilia Federation of America (HFA) has pledged to increase public awareness of women affected with bleeding disorders through its Focus on the Feminine program.

Under the guidance of Dr. Art Thompson, a glossary was developed to help the reader with a number of specialized terms used throughout the bleeding disorder community.

I hope this book will serve to bridge the gap in awareness between the women who are bleeding and the people who can help. If you are one of those helpers, God bless you.