In 2023 I've consolidated the stuff that's been accumulating on this blog over the last decade or so into a more digestible and permanent form. The resulting book "A Book on CLIPPERS", available through Amazon via the links below, focuses on my experience with CLIPPERS from first symptoms through to diagnosis, treatment and recovery. It also has sections on what is known about CLIPPERS, available treatments, and the key research issues, at least as far as I understand them. The difference between the book and the blog is that the book is a narrative with events in the order they happened and with less of the "fluff" that occasionally cluttered things up on-line. It's even been proof-read!
"A Book on CLIPPERS" is available world-wide as an ebook or a paperback via Amazon's Kindle store. Kindle ebooks can be read on a Kindle device, or any computer or phone for which a Kindle app is available (which is most of them). The ebook is free to members of Kindle Unlimited and otherwise almost free (around 1 USD / 1 GBP / 1 EUR or similar). The paperback is available via the same links (except in India, for reasons known only to Kindle Direct Publishing). I've included links to the store-page in different marketplaces at the bottom of this page. You should be able to preview selected pages ("Look Inside") via these links too. If you read it and like it please leave a rating and/or review at Amazon as it helps improve the visibility of the book.
Here's the blurb:
What’s it like being diagnosed with a brain condition so new and rare that even the doctors treating you have never heard of it, much less treated any other cases? CLIPPERS (Chronic Lymphocytic Inflammation with Pontine Perivascular Enhancement Responsive to Steroids) was first identified in 2010 in a handful of patients in the USA and Europe. This book tells my story from the first seemingly innocuous symptoms in 2011, followed by hospitalisation on a neurological ward, and eventually to diagnosis, treatment, and recovery.
In this honest account you'll learn about:
This book provides a resource about the experience and treatment of CLIPPERS, as well as pointers to the most important research over the last decade. I hope it will inform and inspire both those directly affected by CLIPPERS and anyone else who is interested in rare diseases.
In this honest account you'll learn about:
- how CLIPPERS symptoms can quickly escalate from a minor inconvenience to a major problem
- how a mystery condition is investigated and diagnosed at a leading UK hospital
- the most common CLIPPERS symptoms and treatments
- the challenges of CLIPPERS diagnosis
- important issues and outstanding questions about CLIPPERS
Here are the links to the book:
(DE) https://www.amazon.de/dp/B0BRQS83K6(FR) https://www.amazon.fr/dp/B0BRQS83K6
