Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia

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Sara Palmer (Assistant Professor, Johns Hopkins University)

Living with HHT

Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia

Sara Palmer (Assistant Professor, Johns Hopkins University)

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English

Johns Hopkins University Press
26 January 2018

Medical genetics; Hereditary diseases & disorders; Popular medicine & health

Series: A Johns Hopkins Press Health Book

Hereditary Hemorrhagic Telangiectasia (HHT) is a rare genetic disorder that causes blood vessel abnormalities in the nose, skin, gastrointestinal tract, lungs, brain, and liver. Nosebleeds are the most common symptom of HHT, but abnormal vessels in other organs, if they are not diagnosed and treated, can lead to serious medical complications, including stroke, hemorrhage, anemia, and brain abscess. Psychologist Sara Palmer, who has HHT herself and is an expert in helping people cope with health conditions, draws on current research as she thoroughly describes the symptoms of HHT, explains how the diagnosis is made (and often missed), and details treatment options. While addressing the medical aspects of HHT, Palmer also reveals how people affected by the disorder can maintain their emotional health, take care of family members, and live life as fully as possible. Enriched with illustrations, personal stories of people living with HHT, a glossary, and contact information for the HHT Centers of Excellence (which provide coordinated medical treatment for people with the disorder),

Living with HHT is a complete resource for individuals with HHT and their families. This guide is also essential for health professionals seeking more information about this underdiagnosed disease.

By: Sara Palmer (Assistant Professor Johns Hopkins University)
Imprint: Johns Hopkins University Press
Country of Publication: United States
Dimensions: Height: 229mm, Width: 152mm, Spine: 10mm
Weight: 272g
ISBN: 9781421423906
ISBN 10: 1421423901
Series: A Johns Hopkins Press Health Book
Pages: 160
Publication Date: 26 January 2018
Audience: Professional and scholarly , Undergraduate
Format: Paperback
Publisher's Status: Active

Acknowledgments Introduction Part I 1. Diagnosis 2. The Trouble with Telangiectasias 3. HHT's Hidden Dangers Part II 4. Taking Care of Yourself 5. Taking Care of Your Family 6. Beyond the Family Part III 7. Frontiers in HHT Research Notes Glossary Resources Index

Sara Palmer, PhD, is a psychologist and an assistant professor in the Department of Physical Medicine and Rehabilitation at Johns Hopkins University School of Medicine. She is the coauthor of Spinal Cord Injury: A Guide for Living; When Your Spouse Has a Stroke: Caring for Your Partner, Yourself, and Your Relationship; and Just One of the Kids: Raising a Resilient Family When One of Your Children Has a Physical Disability.

Reviews for Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia

This book is an excellent basic overview of HHT. It describes the condition, the difficulties often found in diagnosis, current and potential future treatments, as well as emotional and social effects for both patients and their families along with coping strategies. Throughout, the ability to live well with knowledge and appropriate care is emphasized. -Jeffrey Pollak, MD, Katharine Henderson, MS, Department of Radiology and Biomedical Imaging, Yale School of Medicine, New Haven, CT, Journal of Radiology Nursing