Happy New Year!
I thought I'd begin 2023 by fulfilling a minor promise to myself to consolidate the stuff that's been accumulating on this blog over the last decade or so into a more digestible and permanent form. The resulting ebook "A Book on CLIPPERS" 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 and the key research issues, at least as far as I understand them. The difference between the ebook and the blog is that the ebook is written more as a narrative with events in the order they happened and with less of the "fluff" or more speculative stuff that occasionally cluttered things up on-line. It's even been proof-read!
"A Book on CLIPPERS" is available world-wide 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). It is free to members of Kindle Unlimited and otherwise almost free (around 1 USD / 1 GBP / 1 EUR or similar). I am investigating the possibility of a physical paperback edition through the same platform and will update on that in due course. I've included some links to the store-page in different marketplaces at the bottom of this post.
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 ebook:
(DE) https://www.amazon.de/dp/B0BRQS83K6(FR) https://www.amazon.fr/dp/B0BRQS83K6
Read other articles in this series at Living With CLIPPERS.
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
