Ehlers-Danlos Syndrome:

‘Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders’ by Claire Smith was published in 2017 and covers co-morbid conditions such as MCAD and POTS.  I haven’t personally read this book yet but it has rave reviews and is endorsed by the leading Clinicians in the UK.

‘A guide to living with hypermobility syndrome: bending without breaking’ by Isobel Knight explains how one woman lives with HMS.  This book contains some useful information on HMS but I did find her level of activity (she’s a dancer) way beyond my comprehension, and it didn’t explain the severe complications which can arise with HEDS.  Available in paperback and Kindle from

One book I don’t recommend is ‘Hypermobility, Fibromyalgia & Chronic Pain’ by Alan Hakim.  Despite being written by some of the leading experts in HMS/EDS in the UK, this book bored me to tears and was so technical and complicated it was unreadable.  It costs a small fortune (nearly £40) and, unless you have a medical degree or want to give it to your doctor, don’t waste your money.


Mast Cell Disease/Histamine:

‘Never Bet Against Occam: Mast Cell Activation Disease And The Modern Epidemics Of Chronic Illness & Medical Complexity’ by Lawrence B Afrin M.D.  This is the first book ever written on MCAD by a Doctor.  And not just any Doctor.  Dr Afrin is one of the world’s leading authorities on MCAD.  This is a large A5 size book containing over 400 pages, though it is split into fairly short chapters and was published in March 2016.  It is aimed at patients, however unless you have a good understanding of medical terminology you will struggle to read it.  It goes into detail about his patients’ symptoms, tests and treatments.  I did find some of the chapters a bit dull if I’m honest as they didn’t really apply to me, but some of the chapters could actually have been my story so I found those bits fascinating.  On the whole if you already have a good understanding of MCAD, and medicine in general, I can highly recommend this book but it is not aimed at beginners to the subject.  Available in paperback from both UK and USA Amazon.

‘My Crazy Life: A Humerous Guide to Understanding Mast Cell Disorders’ by Pamela Hodge is the story of a middle aged woman who suddenly develops severe mast cell disease.  See my review of the book here.  Highly recommended and available on Kindle download from Amazon or as a paperback from Barnes & Noble.

The Beginner’s Guide to Histamine Intolerance by Dr Janice Joneja.  Dr Joneja’s low histamine food list is the one I first used when I was diagnosed with Histamine Intolerance.  This small book is a good starting point to those totally new to the world of histamine sensitivity.  Available on Kindle or in paperback from Amazon.

‘What HIT me?’ by Genny Masterman is an easy to read book charting one woman’s journey with histamine intolerance, but has some useful information for Mast Cell Disease in general, as well as a comprehensive chapter on what foods to avoid and why.  Available in paperback and on Kindle from


2 thoughts on “Books

  1. Pat

    Reading your blog today made me feel less alone in dealing with this way of life.. It has taken over 70 years to have someone put a name on it. That made me feel better as I have been told it was my hormones, thyroid, depression, my imagination or go to a shrink as it couldn’t possibly be something they knew nothing about. Been sent to many doctors, well over 100 over the years. Not on meds yet but looking forward to trying some. thank you for the blog.

    Liked by 1 person

    1. Jak Post author

      Thanks for the kind comment Pat but I’m so sorry to hear you’ve suffered all this time with disbelief and no help 😦 It’s so fabulous to finally find other people who have the same weird symptoms and the same struggles as you isn’t it? I really hope you get some relief from the right drugs and that now you have a diagnosis things feel easier. Jak x

      Liked by 1 person


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