Living With CLIPPERS : The eBook

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:

• 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

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.

Here are the links to the ebook:

(US) https://www.amazon.com/dp/B0BRQS83K6

(UK) https://www.amazon.co.uk/dp/B0BRQS83K6

(DE) https://www.amazon.de/dp/B0BRQS83K6
(FR) https://www.amazon.fr/dp/B0BRQS83K6

(ES) https://www.amazon.es/dp/B0BRQS83K6

(IT) https://www.amazon.it/dp/B0BRQS83K6

(NL) https://www.amazon.nl/dp/B0BRQS83K6

(JP) https://www.amazon.co.jp/dp/B0BRQS83K6

(BR) https://www.amazon.com.br/dp/B0BRQS83K6

(CA) https://www.amazon.ca/dp/B0BRQS83K6

(MX) https://www.amazon.com.mx/dp/B0BRQS83K6

(AU) https://www.amazon.com.au/dp/B0BRQS83K6

(IN) https://www.amazon.in/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.

Has it really been that long?

Dartmoor 2022 Some rare sun.

You know how it is; there's something at the back of your mind that you feel you really should do but you don't quite get round to doing it. And so when I looked back at this blog page it was a bit of a shock that no new posts have appeared for well over a year. (I'm pretty sure I did a bit of tidying up behind the scenes since then, but it's a poor excuse). I don't have an enormous amount to say, which is why there has been such an update drought, but I did manage to miss my own anniversary of a decade since being diagnosed with (probable) CLIPPERS in 2011. I've partly been prompted to write here after a nice email from a fellow CLIPPERS patient who hoped in passing that the blog silence didn't mean anything bad had happened.

Since the last post I've managed not to catch COVID helped by working almost exclusively from home and by taking every vaccine offered. The booster program is a little random here but they seem to be erring on the side of caution as I've had two initial jabs (Astra-Zeneca) and three Pfizer "boosters". I felt pretty mouldy for a day or so after the second Pfizer one but took more care with hydration and ibuprofen after the third which seemed to help. CLIPPERS symptoms have remained absent and I've now been taking Azathioprine for ten years which is not ideal but probably better than the alternative.

I very recently had my annual neurology appointment in London. It was strange travelling in to the centre on the train for only the third or fourth time in the last couple of years when I used to do the journey most weekdays. My status was reviewed by the same neurologist I saw when I was first diagnosed and I was judged to be stable. There's always the question about whether I want to stop the medication and I ask "what are the risks of relapse and what would be the consequences if I came off it" and no-one really knows; so I stay on the medication as it's kept me well so far.  I'll get another MRI in due course to provide an up-to-date reference in case there are any changes further down the line.

Hopefully it won't be so long before the next post. I hope everyone out there is staying as well as possible.

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.

Light at the End of the Tunnel?

The gaps between posts are getting gradually longer and I have little excuse as I've been at home since March save for a brief, COVID-secure, sojourn to Dorset (UK, South Coast) in September. Fortunately my day-job  is intact for the moment and I've avoided COVID (except possibly last Easter - see previous post). So now in the UK we are fortunate to have a vaccine roll-out in progress although who gets which vaccine and when is hard to predict. Broadly speaking, the elderly and those who look after them in a care-setting are high up the list. I haven't been contacted to get a jab yet - the so-called "clinically extremely vulnerable" are in the fourth priority group of nine in recent advice which I notice has just been withdrawn. (In case there is any doubt, yes I will be getting the vaccine at the earliest opportunity.)

Hot off the press is some updated advice to the UK government on vaccine priorities. The full document is here: advice on priority groups for COVID-19 vaccination, 30 December 2020. Some interesting extracts for "clinically extremely vulnerable" people  i.e. including CLIPPERS patients being treated with steroids and/or steroid-sparing immunosuppressants include:

"the overall risk of mortality for clinically extremely vulnerable younger adults is estimated to be roughly the same as the risk to persons aged 70 to 74 years"

 "Many individuals who are clinically extremely vulnerable will have some degree of immunosuppression or be immunocompromised and may not respond as well to the vaccine. Therefore, those who are clinically extremely vulnerable should continue to follow government advice on reducing their risk of infection."

 "Consideration has been given to vaccination of household contacts of immunosuppressed individuals ..." (but until evidence is accrued ) "... the committee is not in a position to advise vaccination solely on the basis of indirect protection."

"Once sufficient evidence becomes available the committee will consider options for a cocooning strategy for immunosuppressed individuals, including whether any specific vaccine is preferred in this population."

So it sounds like the case for vaccinating immuno-suppressed people early is being strengthened and they are considering whether to also vaccinate other members of those households if there is evidence that the vaccines also reduce transmission. They also don't know which vaccine if any is a better fit for vulnerable groups. So no magic bullets yet and of course the UK government does not have a brilliant record for "following the science" whatever they may say publicly. Fingers-crossed for 2021.

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.

Life in Lockdown

The daily "commute"

The UK is emerging from coronavirus lockdown - too soon? - and as one of the "clinically highly vulnerable" due to immunosuppression I have been advised (the UK government *advises* the vulnerable rather than instructing them) not to even leave the house for the last 3 months. Having carried out my own risk assessment I decided that it was better for my sanity and physical well-being to take a daily walk around the nearby park and field. Some days a bit of planning is required to avoid dog-walkers but going before work (I'm working at home) means there's very few folk about. So far so good and a world away from my usual two-train journey into and across London. Whether I ever go back to that commute is a discussion for another day, but work are currently saying we shouldn't expect to be back in the office this side of Christmas - I won't argue with that.

The future is a bit less certain for us "shielders" as we continue to be at risk with the virus in circulation. The big question is how much risk? I may be classed as vulnerable but I am not unwell or unfit so who knows how I would deal with COVID? An effective vaccine may be the only way to get some certainty while the virus is still around. There are many teams working on different kinds of vaccines including a trial currently in it's early stages at Imperial College in London. Vaccines which rely on live virus (not the IC one) may not be suitable for people like me despite their likelihood of  being most effective. For the time being it's a case of keeping my head down until the picture is clearer.

Like many others in the UK I've had a couple of bad viruses this year already. One was cold-like and knocked me out for two weeks plus at Christmas. I had another around Easter - not sure how I caught that! - which was more sore-throat and cough. No temperature on either occasion but had some episodes of breathlessness including one particular evening at Easter where my heart was pounding and I couldn't get to the kitchen and back without panting. Were either of those COVID - I've no idea but they weren't classic symptoms and I wasn't tested. When they get the antibody tests sorted out I will try and get tested just to see .... in any case it currently isn't known whether a positive antibody response guarantees resistance. We continue to live in interesting times. Stay safe!

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.