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Blood Brothers Who Shared Their Stories and Experiences in the Pages of This Book Copyright © 2017 by Hemophilia Federation of America All rights reserved. Published by Little Creek Press® A Division of Kristin Mitchell Design, Inc. 5341 Sunny Ridge Road Mineral Point, Wisconsin 53565 Book Coordination: Kyle McKendall Editor: Kit Salisbury Contributing Writer: Anna Sutherland Book Design: Little Creek Press and Book Design First Edition February 2017 No part of this book may be used or reproduced in any manner whatsoever without written permission from the Hemophilia Federation of America. Printed in Wisconsin, United States of America. For more information or to order books please call or email us at: 800-230-9797 or [email protected] This book is a collection of personal opinions and a representation of individual experiences. While extensive efforts have been made to ensure accuracy of the content, the essays are the sole expression and opinion of the individual author and do not represent HFA or its Board of Directors. This book is not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. For diagnosis and treatment of a medical condition, please consult a physician. HFA is not liable for any negative consequences a reader may experience from following the information in this book. TABLE OF CONTENTS About HFA . 5 About Bleeding Disorders . 6 Introductions Carl Weixler, HFA Past President. 7 Dana Francis, MSW . 10 Chad . .. 14 Dave . 18 Felix . 22 David . 26 Gary . 30 François . 34 Mickey . 38 Michael . 42 Isaiah . 46 Ray . 50 John . 54 Murali . 58 Douglas . 62 Shawn . 67 Stewart . 70 THIS BOOK IS DEDICATED TO adult men with bleeding disorders and their families, their courage and perseverance to keep moving forward despite all obstacles, and their ability to advocate. They are an inspiration to us all. For those living and lost, this book honors and remembers you, always. Your story will not be forgotten. ACKNOWLEDGEMENTS In all humility, we express our gratitude to the Blood Brothers who shared their stories and experiences in the pages of this book. We were honored to get to know and learn from you. Our thanks to the heroes in the community who refused to remain silent as they championed the needs of those with living with a bleeding disorder. Many thanks to Dana Francis and Carl Weixler, not only for their thoughtful introductions, but for their lifelong dedication and commitment to people with bleeding disorders. Thanks to Anna Sutherland and Kit Salisbury for their help in crafting the Blood Brothers’ stories, allowing us to share them with the community to inspire others. MISSION Assist and advocate for the bleeding disorders community. VISION Remove all barriers to both choice of treatment and quality of life. ABOUT HFA emophilia Federation of America, Inc. (HFA) His a patient education, patient services and advocacy organization serving the rare bleeding disorders community. HFA is exclusively focused on the bleeding disorders patient and caregiver community. Based in Washington, DC, HFA works in conjunction with other national and state In the 1980s, approximately 90% of people with organizations on behalf of families living with severe hemophilia were infected with the HIV bleeding disorders. Its officers and staff maintain virus, and almost all patients with hemophilia a highly visible presence, representing the who used factor products before 1988 were infected bleeding disorders community on Capitol Hill with Hepatitis C (HCV). Blood-borne infections and speaking regularly before the Food and were a major complication of treatment for Drug Administration, Centers for Disease Control people living with hemophilia. At the time, factor and Prevention, and other key agencies. HFA is products were manufactured using large plasma- committed to community education and provides donor pools and the process lacked specific tests for tools and resources to give the community a voice infectious agents. This lack resulted in the tragic at state and federal legislatures. loss of many thousands of lives and brought to the forefront the need to change the manufacturing HFA comprises a national organization office and screening processes. From this devastation, and 43 state and local community-based the Hemophilia Federation of America (HFA) was affiliated organizations made up of numerous born and thus a voice for the patient community. men, women, children, moms, dads, siblings, grandparents and friends impacted by a bleeding HFA is a non-profit 501(c)(3) organization disorder. Additionally, HFA works with many incorporated in 1994 to address the evolving needs non-affected individuals and organizations, such of the bleeding disorders community. HFA serves as healthcare and therapy providers, specialty as a community-based organization, committed pharmacies, donors, and insurers who play a to championing the needs of families living with significant role in the community. chronic, often painful, and debilitating bleeding disorders. HFA advocates for safe, affordable, HFA programs include a wide range of adult and obtainable therapies and health coverage. outreach initiatives, as well as broad-based Ultimately, HFA seeks a better quality of life for all support for families living with hemophilia, von persons with bleeding disorders. Willebrand disease and other bleeding disorders. BLOOD BROTHERHOOD 5 ABOUT BLEEDING DISORDERS bleeding disorder is present when the blood does not clot WHAT IS VON A properly. Blood clotting is a complex process that involves WILLEBRAND DISEASE? as many as 20 different plasma proteins. All clotting proteins Von Willebrand Disease (vWD) is the and platelets need to work effectively and in the correct order most common type of bleeding disor- to form a proper clot that is strong enough to stop bleeding. der, affecting an estimated 1% of the A bleeding disorder occurs when the body is unable to activate world’s population. the entire “clotting cascade” correctly. VWD affects males and females equal- WHAT IS HEMOPHILIA? ly. However, because symptoms can Hemophilia is very rare—only about 20,000 Americans have the be mild, many people affected have condition—and affects mostly males. not been diagnosed. People with vWD have decreased or malfunctioning von Hemophilia affects 1 in 5,000 male births in the U.S. and ap- Willebrand Factor (vWF) activity and proximately 400 babies are born with hemophilia each therefore cannot form a proper plate- year. All races and economic groups are affected equally. let plug. People with hemophilia who have access to factor replacement therapy have a normal life expectancy. SYMPTOMS OF A BLEEDING DISORDER TYPES OF HEMOPHILIA A person with hemophilia can bleed Bleeding disorders are treated differently depending on what inside or outside of the body. People protein is missing in the blood. Hemophilia is one of the most with hemophilia do not bleed faster, common bleeding disorders and is classified as follows: they just bleed longer. The most com- • Hemophilia A—Also called classic hemophilia, it is four times mon types of bleeds are into the joints more common than Hemophilia B, and it occurs when factor and muscles. Other symptoms in- VIII levels are deficient. clude: nosebleeds, prolonged bleeding • Hemophilia B—Also called Christmas disease, it occurs when from minor cuts, bleeding that stops factor IX levels are deficient. and resumes after stopping for only a short time, blood in the urine, blood • Hemophilia C—It occurs when factor XI levels are deficient. in the stool, large bruises, hematomas, • Acquired hemophilia—A person can develop hemophilia unexplained bruising, and excessive as a result of illness, medications, or pregnancy. Acquired bleeding with dental work or tooth hemophilia is extremely rare and usually resolves itself extraction. with proper diagnosis and treatment. For more information about bleeding disorders and the bleeding disorders community, please visit: www.hemophiliafed.org 6 HEMOPHILIA FEDERATION OF AMERICA INTRODUCTIONS By Carl Weixler, HFA Past President lood Brothers! These are very special men well. The bonds forged there are still tight, even and boys who have an inherently ultra- though few of us remain. When technology had Bclose bond—a bond like no other—a progressed to the point that we were finally able relationship that can be difficult to explain that to take factor at home, we all thought we had it is based on the shared experiences and pain of made, until HIV and HCV hit in the 1980s. Then living with a bleeding disorder. Although we all we had to be even more careful about who we have different types of relationships—those with trusted with our medical history because not only our parents, spouses, children, friends, coworkers was our blood disorder hard for some to under- and so on—some are close to the heart and some stand, we feared the public’s reaction to an AIDS are casual. And sometimes the relationships that diagnosis. Add to that the fact that our longev- are the strongest are the ones we choose. ity was uncertain, given that many of our Blood Brothers were dying from AIDS and HCV. Those My name is Carl Weixler. I am 55-years-old and of us who are blessed to have lived through that live with severe hemophilia B. I grew up in the perilous time know that we have “endangered “Dark Ages” of hemophilia care when we only re- species” status because more than 90% of our ceived whole blood and ice-packs for our bleeds peers died from the tainted blood they unknow- in a hospital. Those were the days of extremely ingly used for treatment. With this knowledge painful and damaged joints. Back in the 1960s, of our history comes the critical responsibility to on average, I could bank on encountering about mentor future generations. As we look forward to five of us Brothers at the hospital at the same passing the torch, we survivors must instill in our time every few weeks dealing with our bleeding younger Blood Brothers an appreciation of our episodes.
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