Living with HHT

"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."

 

 

Support Cure HHT – Click on the Amazon.com link through the Cure HHT website!

Reserve an advanced copy of Living with HHT though the Amazon.com link on our website and Cure HHT will receive a portion of the proceeds!  Generously, Dr. Sara Palmer has pledged all of her royalties from this book to Cure HHT.  Please share this link with family and friends wishing to purchase this book!!

Please note:  This Amazon Associates referral link is different than purchasing through the Amazon Smile program and Cure HHT will receive a greater portion of your purchase price. 

 

SARA PALMER, PhD AND JOHNS HOPKINS UNIVERSITY PRESS ANNOUNCE COMPREHENSIVE BOOK ON HHT.

A Cure HHT Board Member, Sara has HHT herself. As a psychologist, she is an expert in helping people cope with health conditions. Dr. Palmer draws on current research and thoroughly describes the symptoms of HHT, explains how the diagnosis is made (and often missed), and details treatment options.

Sara also addresses how HHT patients can maintain their own emotional health, help other family members including children, partners and parents, 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, this is a complete resource for individuals with HHT and their families.

 

"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."

 

Why I wrote a book about HHT: In my professional life as a rehabilitation psychologist, I’ve specialized in helping people live better lives with chronic illness and disability. I’ve co-authored several Johns Hopkins Press Health Books about the medical, emotional and social aspects of various disabilities.  I saw a unique opportunity to combine my professional expertise and my personal experience with HHT to help other patients. Several years ago, I began presenting lectures and small group discussions at HHT Patient and Family Conferences on the emotional and family impact of HHT. I also wrote some HHT fact sheets and created a webinar on managing the psychosocial aspects of HHT.

After years of interacting with people who have HHT,  I’ve learned that many patients—even after going to HHT conferences or specialized treatment centers—don’t fully understand what HHT is all about or how to take care of themselves and their families.  Families have a difficult time talking about HHT and understanding that if one person is diagnosed with HHT, multiple family members may be at risk. There’s a lot of denial and resistance to getting screened and treated, even in families who’ve already had tragic medical events. What’s more, the emotional effects of HHT, including sadness, anxiety, grief, stress and relationship problems have an impact on quality of life for most people with HHT, but there’s little professional guidance on how to manage them.

So I decided to write a book about HHT explaining the complex medical aspects of the disease in every day, non-medical language and addressing the emotional and family issues associated with HHT. The book is for people who have HHT (or think they might have it), for their families, and for health care providers who want to learn about HHT diagnosis, treatment and research.

I hope that Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia, will raise your awareness about HHT. Perhaps it will help you identify a friend or coworker who has HHT. If you’ve been diagnosed with HHT, I hope the book will teach you everything you need to know to manage and cope with your disease, get proper treatment, care for your family and live the healthiest life possible.

 

"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."