Brill - Chronic illnesses, syndromes, and rare disorders: the ultimate teen guide

It Happened to Me

Series Editor: Arlene Hirschfelder

Books in the It Happened to Me series are designed for inquisitive teens digging for answers about certain illnesses, social issues, or lifestyle interests. Whether you are deep into your teen years or just entering them, these books are gold mines of up-to-date information, riveting teen views, and great visuals to help you figure out stuff. Besides special boxes highlighting singular facts, each book is enhanced with the latest reading lists, websites, and an index. Perfect for browsing, there are loads of expert information by acclaimed writers to help parents, guardians, and librarians understand teen illness, tough situations, and lifestyle choices.

1. Epilepsy: The Ultimate Teen Guide, by Kathlyn Gay and Sean McGarrahan, 2002.
2. Stress Relief: The Ultimate Teen Guide, by Mark Powell, 2002.
3. Learning Disabilities: The Ultimate Teen Guide, by Penny Hutchins Paquette and Cheryl Gerson Tuttle, 2003.
4. Making Sexual Decisions: The Ultimate Teen Guide, by L. Kris Gowen, 2003.
5. Asthma: The Ultimate Teen Guide, by Penny Hutchins Paquette, 2003.
6. Cultural DiversityConflicts and Challenges: The Ultimate Teen Guide, by Kathlyn Gay, 2003.
7. Diabetes: The Ultimate Teen Guide, by Katherine J. Moran, 2004.
8. When Will I Stop Hurting? Teens, Loss, and Grief: The Ultimate Teen Guide to Dealing with Grief, by Ed Myers, 2004.
9. Volunteering: The Ultimate Teen Guide, by Kathlyn Gay, 2004.
10. Organ TransplantsA Survival Guide for the Entire Family: The Ultimate Teen Guide, by Tina P. Schwartz, 2005.
11. Medications: The Ultimate Teen Guide, by Cheryl Gerson Tuttle, 2005.
12. Image and IdentityBecoming the Person You Are: The Ultimate Teen Guide, by L. Kris Gowen and Molly C. McKenna, 2005.
13. Apprenticeship: The Ultimate Teen Guide, by Penny Hutchins Paquette, 2005.
14. Cystic Fibrosis: The Ultimate Teen Guide, by Melanie Ann Apel, 2006.
15. Religion and Spirituality in America: The Ultimate Teen Guide, by Kathlyn Gay, 2006.
16. Gender Identity: The Ultimate Teen Guide, by Cynthia L. Winfield, 2007.
17. Physical Disabilities: The Ultimate Teen Guide, by Denise Thornton, 2007.
18. MoneyGetting It, Using It, and Avoiding the Traps: The Ultimate Teen Guide, by Robin F. Brancato, 2007.
19. Self-Advocacy: The Ultimate Teen Guide, by Cheryl Gerson Tuttle and JoAnn Augeri Silva, 2007.
20. Adopted: The Ultimate Teen Guide, by Suzanne Buckingham Slade, 2007.
21. The Military and Teens: The Ultimate Teen Guide, by Kathlyn Gay, 2008.
22. Animals and Teens: The Ultimate Teen Guide, by Gail Green, 2009.
23. Reaching Your Goals: The Ultimate Teen Guide, by Anne Courtright, 2009.
24. Juvenile Arthritis: The Ultimate Teen Guide, by Kelly Rouba, 2009.
25. Obsessive-Compulsive Disorder: The Ultimate Teen Guide, by Natalie Rompella, 2009.
26. Body Image and Appearance: The Ultimate Teen Guide, by Kathlyn Gay, 2009.
27. Writing and Publishing: The Ultimate Teen Guide, by Tina P. Schwartz, 2010.
28. Food Choices: The Ultimate Teen Guide, by Robin F. Brancato, 2010.
29. Immigration: The Ultimate Teen Guide, by Tatyana Kleyn, 2011.
30. Living with Cancer: The Ultimate Teen Guide, by Denise Thornton, 2011.
31. Living Green: The Ultimate Teen Guide, by Kathlyn Gay, 2012.
32. Social Networking: The Ultimate Teen Guide, by Jenna Obee, 2012.
33. Sports: The Ultimate Teen Guide, by Gail Fay, 2013.
34. Adopted: The Ultimate Teen Guide, Revised Edition, by Suzanne Buckingham Slade, 2013.
35. Bigotry and Intolerance: The Ultimate Teen Guide, by Kathlyn Gay, 2013.
36. Substance Abuse: The Ultimate Teen Guide, by Sheri Bestor, 2013.
37. LGBTQ Families: The Ultimate Teen Guide, by Eva Apelqvist, 2013.
38. Bullying: The Ultimate Teen Guide, by Mathangi Subramanian, 2014.
39. Eating Disorders: The Ultimate Teen Guide, by Jessica R. Greene, 2014.
40. Speech and Language Challenges: The Ultimate Teen Guide, by Marlene Targ Brill, 2014.
41. Divorce: The Ultimate Teen Guide, by Kathlyn Gay, 2014.
42. Depression: The Ultimate Teen Guide, by Tina P. Schwartz, 2014.
43. Creativity: The Ultimate Teen Guide, by Aryna Ryan, 2015.
44. Shyness: The Ultimate Teen Guide, by Bernardo J. Carducci, PhD, and Lisa Kaiser, 2015.
45. Food Allergies: The Ultimate Teen Guide, by Jessica Reino, 2015.
46. Self-Injury: The Ultimate Teen Guide, by Judy Dodge Cummings, 2015.
47. Activism: The Ultimate Teen Guide, by Kathlyn Gay, 2016.
48. Pregnancy and Parenting: The Ultimate Teen Guide, by Jessica Akin, 2016.
49. Chronic Illnesses, Syndromes, and Rare Disorders: The Ultimate Teen Guide, by Marlene Targ Brill, 2016.

Chronic Illnesses, Syndromes, and Rare Disorders

The Ultimate Teen Guide

Marlene Targ Brill

It Happened to Me, No. 49

ROWMAN & LITTLEFIELD

Lanham Boulder New York London

Published by Rowman & Littlefield

A wholly owned subsidiary of The Rowman & Littlefield Publishing Group, Inc.

4501 Forbes Boulevard, Suite 200, Lanham, Maryland 20706

www.rowman.com

Unit A, Whitacre Mews, 26-34 Stannary Street, London SE11 4AB

Copyright 2016 by Marlene Targ Brill

All images courtesy of Thinkstock

All rights reserved . No part of this book may be reproduced in any form or by any electronic or mechanical means, including information storage and retrieval systems, without written permission from the publisher, except by a reviewer who may quote passages in a review.

British Library Cataloguing in Publication Information Available

Library of Congress Cataloging-in-Publication Data

Names: Brill, Marlene Targ, author.

Title: Chronic illnesses, syndromes, and rare disorders : the ultimate teen guide / Marlene Targ Brill.

Description: Lanham : Rowman & Littlefield, [2016] | Series: It happened to me ; no. 49 | Includes bibliographical references and index.

Identifiers: LCCN 2015049693 (print) | LCCN 2016001463 (ebook) | ISBN 9781442251618 (hardback : alk. paper) | ISBN 9781442251625 (electronic)

Subjects: LCSH: Chronic diseasesPopular works. | TeenagersLife skills guides.

Classification: LCC RA644.6 .B75 2016 (print) | LCC RA644.6 (ebook) | DDC 616/.0440835dc23

LC record available at http://lccn.loc.gov/2015049693

The paper used in this publication meets the minimum requirements of American National Standard for Information SciencesPermanence of Paper for Printed Library Materials, ANSI/NISO Z39.48-1992.

Printed in the United States of America

To all the teens and their families

who are thriving withor in spite oftheir chronic illness, syndromes, or rare disorders,

and to the memory of Madeline Horwitz Boccuzzi and Kody Beach,

two vibrant and talented young people whose lives were cut short by melanoma

Contents

Acknowledgments

E very book takes a community to produce. Sure authors do the organizing and writing. But what about help with research, editing, proofreading, and production? And a book with a different topic for each chapter takes even more investigating and leads from a host of experts in their fields. This is the case with Chronic Illnesses, Syndromes, and Rare Disorders: The Ultimate Teen Guide.

I am indebted to the following people for their professional expertise and assistance finding teens to interview: Jennifer Glicoes, JPA Health Communications for the Melanoma Research Foundation; Mary Buhring, National Foundation for Celiac Awareness; Michelle Pernsteiner, National PKU Alliance; Barry Siegel, DS, Center for Independent Futures, HEARTwords program; Janie Baskin, author and HEARTwords volunteer; Julie Rowe and Josh Radinsky, Sams educators and parents; Dr. Robert Magrisso; Shonda King, Sickle Cell Center, University of Illinois Hospitals; Ann Garcia, National Association for Down Syndrome, Family Support Coordinator; Laura Drower, Down syndrome advocate and Adrians mother; and Sharon Brill, Crohns expert.