Tuesday, 30 June 2015

CLIPPERS in the news

The Detroit News (not a publication I was previously familiar with) has recently run an article about CLIPPERS based on the experience of Roger, a military veteran in Michigan. You can read the article here:
(I can't guarantee this link will stay working forever as it is on an external site).

It's an interesting story and reminded me of my own experience when after several weeks of uncertainty one of my doctors produced this article about this "thing called CLIPPERS" which seemed to describe quite accurately what I had. I did wonder about the title: "World's 51st case of disorder is in Michigan". I haven't counted lately, but I suspect the number of published cases may be around (or probably exceed) 51 as they say in the article, but I also suspect the number of diagnosed cases worldwide runs into the hundreds. Whatever, it is still a very rare condition and stories like this which help raise the profile can only be a good thing. I hope Roger continues with his recovery from CLIPPERS.

Read other articles in this series at Living With CLIPPERS.

Creative Commons Licence

Friday, 12 June 2015

More blood.

Filled tubes, 9 of them.
So, following on from last time, I finally managed to get my blood sample collected for the Mayo CLIPPERS study. In fact, I had no problem filling all 9 tubes - I have good veins apparently. Hopefully it survived the trip over the Atlantic with FedEx and will contribute in some small way to helping understand more about CLIPPERS. 
Two warts merged into one.
As of the beginning of June, I am over four years since first symptoms and still taking Azathioprine with few side-effects. Apart from occasional blips in liver scores, I have a few warts (7ish) which is apparently quite common on Azathioprine. They are confined to fingers with a few periungual ones for good luck. Not very pleasant, but could be worse - I had them blasted with cryotherapy recently which will hopefully help. That's enough about warts.

Finally, I'm not sure how long this has been live, but CLIPPERS now has a short entry on Radiopaedia (think of Wikipedia, but for doctors)

Read other articles in this series at Living With CLIPPERS.

Creative Commons Licence
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Wednesday, 13 May 2015


A box of stuff.

A bag of tubes.
I realise there's been a bit of a gap between posts recently - sorry about that.  In the interim I received the kit from the Mayo Clinic to allow my blood to be transported half-way round the world within a day or so of being drawn; I never imagined one day my blood would be flying to America. When it arrived, the box was big, very big. However I soon discovered that most of the volume was taken up by the polystyrene container which will hopefully ensure everything arrives intact. There is a little bit of paperwork, but most of it has been filled out already and fortunately, as a non-US citizen, I don't need to fill out the tax declaration. 

As someone who is nearing 4 years since first CLIPPERS symptoms, and has had over 3 years of normal life on Azathioprine, it would be nice to think there was something interesting in my blood. I suspect though, that the key will be to get sufficient patients enrolled that some subtleties start to emerge from the CLIPPERS population as a whole.

Read other articles in this series at Living With CLIPPERS.

Creative Commons Licence
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Sunday, 29 March 2015

Glimpses of CLIPPERS Neuropathology

Seeing blobs on contrast-enhanced MRI and not being able to tie my shoe-laces up is one thing, but figuring out the root cause(s) and mechanism(s) of CLIPPERS is complicated. In fact it is probably far more complicated than I imagine, and I already think it is complicated. One of the most valuable resources for scientists investigating CLIPPERS is access to brain-tissue for direct investigation. Until some suitable animal model displaying CLIPPERS-like features is found, we have to rely on sporadic and sometimes opportunistic access to brain-tissue samples from patients. 

I have a couple of reports from such studies in my CLIPPERS folder. These are hard for me, as a layman (and someone who left biology behind a long time ago) to discuss as I am aware of my lack of understanding and cautious about passing it on. Anyway, here goes ....

The first report is from a conference last year (The International Congress of Neuroimmunology). The title nicely summarises the study:  "Neuropathological evaluation of four Danish cases of CLIPPERS: Evidence of generalized neuroinflammation but no pre-lymphoma". (Unfortunately the full text does not seem to be publically available, however as a conference paper it was less than half a page of text anyway - a bit mean of the publisher though.) One of the four cases had been autopsied so presumably the whole brain was available for analysis. Perhaps the most interesting finding was that some broader evidence of inflammation was found in brain tissue - "A similar, but less prominent, T-cell infiltration was found in the normal appearing cerebral cortex" - which would not light up in contrast-enhanced MRI i.e. not in visible lesions. Perhaps the most reassuring finding was that "Our study does not suggest that CLIPPERS is a pre-lymphoma condition".

The second report was of a single, quite severe case, of CLIPPERS in an elderly woman who subsequently died of other causes. In their paper "Chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids (CLIPPERS): postmortem findings", the authors found less extensive inflammation - "The dura, cortical gray and white matter, ..., were unremarkable." They also remarked that "... our case does show that evolution to lymphoma, even after several years, is not inevitable in CLIPPERS."

So, in these small studies, there are already some interesting agreements and disagreements. It is possible the the variation in CLIPPERS presentation and patients may explain things, or differences in the experimental methods which I have not picked up on. Small steps.

Read other articles in this series at Living With CLIPPERS.

Creative Commons Licence