there was no internet and very little information on hemophilia available to parents. You were given this frightening diagnosis, and then sent home with your new baby, with nothing to read or reference. We seemed to be waiting to see what happened next, which meant, waiting for him to bleed.
Georgetown, MA (PRWEB) February 2, 2009
Parents of children suffering from hemophilia, a blood clotting disorder, need not worry, feel isolated or be uneducated about their child's condition. Raising a Child With Hemophilia: A Practical Guide for Parents will answer parents' questions about the disorder, reveal what to do when their child experiences a bleed, and instruct parents in getting the best treatment for their child.
Hemophilia is a hereditary blood disorder in which the blood does not clot properly. People with hemophilia sometimes cannot stop bleeding on their own. Contrary to popular belief, blood does not gush from a wound or injury when a person has hemophilia; rather bleeding continues at the same rate at those without hemophilia--only much longer. Untreated, continued bleeding can cause joint damage, internal damage, brain damage, crippling or even death. There are approximately 18,000 people with hemophilia in the US.
The book is written by Laureen A. Kelley, the mother of a child with hemophilia. Her son Tommy, born in 1987, has hemophilia A, or factor VIII deficiency. About 85% of all people with hemophilia have factor VIII deficiency, characterized by low or nonfunctioning levels of the factor VIII protein, which is needed in the blood clotting sequence. There are 13 proteins in the blood responsible for clotting. About 10% of people with hemophilia are lacking factor IX, and are diagnosed as having hemophilia B. Treatment consist of intravenous infusions of the missing protein, called "factor." Factor comes in concentrated powder that is mixed with a sterile diluent. The infusion process only takes minutes when properly administered, and the medicine works immediately to clot blood.
Kelley, who has a child psychology degree, wrote the book so parents would not experience the same sense of isolation, ignorance and fear that she first felt. "When Tommy was born," she said, "there was no internet and very little information on hemophilia available to parents. You were given this frightening diagnosis, and then sent home with your new baby, with nothing to read or reference. We seemed to be waiting to see what happened next, which meant, waiting for him to bleed." Kelley and her husband, Kevin, experienced many anxious hospital visits in Tommy's first year for head bumps, knee bleeds and teething bleeds. Then Kelley was given some great advice on treatment options by another mother--information her own hematologist had not shared. "It made me realize that parents are experts, too," she said. "A mission was born: to capture all the information and experiences of other hemophilia families, and publish a book that would share this for all, in language the average parent could understand. And to empower parents to make better treatment and lifestyle decisions for their children."
The book covers: dealing with the diagnosis; coping with initial feelings; detecting bleeds; knowing which type of medicine to give your child; handling school and sports; navigating the emergency department; and dealing with insurance, which occupies two full chapters.
The book, first published in 1990, has been called the "Bible" of hemophilia by most families in the US with hemophilia. This new fourth edition is completely updated with the latest treatments and insurance trends, and medical breakthroughs. The information is interspersed with quotations from over 160 families who share their experiences.
Sponsored by CSL Behring, a global provider of blood clotting therapies for families with bleeding disorders, the book is available free of charge to families with hemophilia. Kelley is not a medical provider, and stresses that parents must bring their child with hemophilia to a certified hemophilia treatment center (HTC) for proper diagnosis and treatment. With training from their HTC, parents will be able to inject their child at home and lead relatively normal lives. The book is meant to complement what parents will learn from their HTC. To order this resource and other books and newsletters on hemophilia, please visit the LA Kelley Communications website. "This is a book every family with hemophilia must have on their nightstand," says Kelley. "And every child in the US with hemophilia should have a great quality of life today."
About LA Kelley Communications, Inc.
LA Kelley Communications is a private consulting firm specializing in innovative, ground-breaking educational resources for families with bleeding disorders. Founded in 1990 by Laureen A. Kelley, mother of a child with hemophilia, it has created the first hemophilia parenting book, the world's first children's books on hemophilia, the world's first book on von Willebrand Disease and coming in 2009 the world's first book on inhibitors for families. The company also founded Project SHARE, which donates life-saving blood clotting medicine to bleeding disorder patients in 45 impoverished countries.
Laurie Kelley, President
LA Kelley Communications, Inc.
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