Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia

by Sara Palmer

Everything you need to know about nosebleeds, arteriovenous malformations, and other symptoms of HHT. 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.

160 pages, Paperback

Published December 1, 2017

Reviews

[Jane · Rating 5 out of 5]

What was it like?

I have heard of this condition but not seen many books about this condition. Hereditary Hemorrhagic Telangiectasia (HHT)
The author has researched this subject well as she herself suffers from this disease.
It is quite easy to misdiagnose this – and people do not know they have this with a tiny percentage 10-15% who are diagnosed correctly. This is not just a “nosebleed disease”
It is slightly unfair to state that this is misdiagnosed as it is uncommon, and specialists may never have seen this. The symptoms can be attributable to other problems.
This is book to help suffers and to gain and understanding and how to manage this.

What were the highlights?

The author is writing this as she herself suffers from this. The reader will not find this book difficult to read as the author writes well and paragraphs are in sections so if the reader needs to find an aspect they need to read about they do not need to spend time needlessly going through unnecessary material.
There is a well set out glossary which is valuable in order to understand abbreviations and medical jargon.
The resource section is useful, but readers need to be aware this is written for the USA audience. Saying that it is to be noted there is a Facebook Group in Ireland which may be useful and readers worth joining to find UK members or a link to UK resources.

Strengths & weaknesses:

This is a well set out book for HHT sufferers or those who feel they may have the disorder. Although written for the USA this equally apt for the UK reader. It certainly would be that starting block to go to your clinician and say I think I know what is wrong with me.

I found no weaknesses in this excellent text book.

Who should read it?

All Physicians, Emergency Department Team, GPs and patients and their families.

[Krista · Rating 5 out of 5]

Very educational.

[Reeds]

Looking forward to reading this