Here you'll find answers to the most common questions about my book.

Q: Why did you decide to write this book?
A: I want share the knowledge I have gained about girls who were born with severe hemophilia and how, as a parent, you struggle many days just to help them stay alive. I want to work together with the medical community to build a trust network so that they will truly understand what happens when they do not immediately treat a patient who is experiencing a bleeding episode. Currently, most doctors believe they must run tests to diagnose a patient, but for someone who has been previously diagnosed with a bleeding disorder, that is a waste of time and it causes many other problems, including pain and over-use of treatment products. Waiting too long to treat someone who is severely bleeding begins a death spiral; a bleed that will not stop.

The stories in the book, all true, will surprise even the most seasoned professional. One reason for this is that it is often after a doctor or nurse leaves their shift that more severe problems occur with a hemophilia patient and some doctors never find out what happened and what they might have done to create a better outcome for their patient.

Q: What's my goal for my book?

A: To create a trust network across the medical community -- every medical professional; doctors, nurses, technicians, phlebotomists, IV technicians, and everyone who may have an impact on the life of a girl with a bleeding disorder.This trust network would enable velocity in treating people with bleeding orders and decrease risk in treatment approaches.

We need to build trust from the patients to the parents and throughout the medical community and to challenge the paradigm "diagnose first, treat later" regarding hemophilia. If they simply understand that people with bleeding disorders have already been diagnosed and get on with the appropriate treatment, this would prevent these patients from entering into the death spiral. It would decrease hospital costs (from running unnecessary tests) and decrease the risk to their patients.

Q: What is hemophilia?

It is a rare bleeding disorder, usually inherited. In a person with hemophilia, the blood clotting is delayed. A person with hemophilia may bleed longer than others after an injury and may also bleed internally or even spontaneously. Continued bleeding can damage organs or tissues and joints, and it may be fatal; delayed clotting also leads to poor wound healing. People with hemophilia have a deficiency of a clotting factor needed for normal blood clotting. Clotting factors all work together with blood platelets to help produce a strong blood clot. Without all these components working together correctly, normal blood clotting does not occur.

Hemophilia is classified as mild, moderate, or severe. In mild hemophilia, >5 percent to 40 percent of a specific clotting factor activity is present, and it is characterized by infrequent bleeding, sometimes after only major injuries or surgery. In moderately severe hemophilia, only 1 percent to 5 percent of a specific clotting factor activity remains, and it is characterized by excessive bleeding after injury. In severe hemophilia, less than 1 percent of a specific clotting factor activity or an undetectable amount by current assays is found, and it is characterized by more frequent and spontaneous bleeding episodes.

Q: What is the difference between a symptom and a sign, when it comes to bleeding disorders?

A: A sign is visible evidence of a disease. A symptom is not visible, but it is felt by the person with the disease. An external cut where bleeding is prolonged is a sign of a bleed. A symptom of a joint bleed in a person with hemophilia may be pain or tingling in the joint. A person with a bleeding disorder who visits an emergency room may experience delayed care because there are often no signs of an internal bleeding episode.