A guide to living with EDS- HT type

As it is the end of the month this is the last in my series for #edsawareness month of May. I am always interested in writing and speaking opportunities, please do get in touch if you have something I might be interested in.

A guide to living with Ehlers-Danlos Syndrome (hypermobility type) by  Isobel Knight book is absolutely excellent, it is the second edition and there are a few noticeable updates from the first edition. The most important thing to say about this book is if you or your children have EDS-HT or you suspect you do, you must buy it!

Yellow Book

The first time that I read it I pretty much exclaimed ‘ahh’ or ‘oh’ of relisations or recognition on each chapter and often several times.

This book really makes it clear how multi-systemic EDS-HT is. Collagen is in every part of your body, so it makes sense that every part will be affected.

There were a couple of bits that made me laugh – apparently we ‘frequently use their hands when talking’. I thought this was just a personality trait, rather than associated with EDS! This is me at our wedding – there are several photos of me talking to people at our wedding and in all of them I am gesticulating.

HayleyRuth Photography  - jen and Gavin-1312

Other points I already knew – such as we ‘bruise easily and scars heal badly’. I’ve always thought this was a decidedly cruel aspect of the illness. It makes us quite clumsy, lack of proprioception (where we are in the room/how our body relates to the area) so we are much more prone to injury and then it makes it easy for us to get injured AND heal badly. It does seem somewhat like a perfect storm. I am always covered in bruises and more often than not I don’t know how I get them. When I was teaching I had a line of bruises on both thighs where I constantly banged into desks. Even a tiny paper cut will take weeks to heal and often leave a scar.

Another key point that I took away, and I knew this on one level, but Knight’s clear explanation and examples really made it clear to me – that is its ‘physiologically hard for them to strengthen their collagenous tissues’. This explains why it takes so long for fitness to build up.

I cannot recommend this book highly enough, it is easy to read (unlike some of the more heavy going medical texts), and Knight’s use of case studies and her own experience makes it interesting too. Like I said I was surprised of how many of my little quirks or different things wrong with me were down to EDS-HT. If you or your children have EDS-HT or you think you do, then a copy of this book will help you immensely.

Disclaimer, I was sent a copy of this edition of the book after I mentioned to a friend who works for the publishing company how much I had enjoyed the first edition and had in fact bought two copies. I am under no obligation to provide a review, positive or otherwise.

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2 Comments

  1. I’m interested that you think it’s a lack of proprioception rather than poor fine motor control because of the collagen problems.

  2. I think it is because I frequently walk into walls and things, often richocheing down the corridor. I also don’t know how I bruise most of the time and again I think this is because I Am not aware of where I am in the space.

    But it could well be fine motor control. I’m not an expert!

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