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Living with HHT

, 200 pages

9 b&w illus.

November 2017



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Living with HHT

Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia

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.

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.

"A must-read for patients and health care professionals seeking information about HHT, an uncommon disease diagnosis. Families will find answers in this thoroughly researched resource, learn about HHT’s psychological impact, and discover coping strategies for living a long and happy life as they navigate their medical journey."

"I strongly recommend this HHT guide to patients, families, and doctors. It provides a wide range of useful information for both the newly diagnosed and veterans. Patient stories give it a refreshing human touch, and the author’s profession combined with her personal experience make it a uniquely informative book."

"This is an outstanding, informative book. Covering medical, social, and emotional aspects of HHT, this work tackles everything a patient may encounter when living with HHT. In addition to being a valuable resource for patients, all physicians could benefit from research and understanding of this disease. I highly recommend it."

"This book is packed with tons of useful information such as the most effective treatments for nosebleeds and how to deal with insurance companies.  Dr. Palmer cuts through the jargon of HHT to share strategies for the diagnosis and management of HHT—helping to convert disability and fear into physical treatment, emotional well-being, and hope."

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