Wednesday, 30 April 2014

CLIPPERS News

 
(Unfortunately the biggest CLIPPERS news this week is not about the neurological condition but about the owner of the American basketball team. I can't compete with that, but can offer a couple of more modest news items. )

I met my neurologist yesterday and, to summarise, "no news is good news". I am being maintained on Azathioprine and will be scanned again in the next few weeks to be on the safe side. Vision (follow-the-finger) was judged good and balance/walking also OK. I'm not brilliant at standing on one leg with my eyes shut but would argue that was also the case before CLIPPERS arrived on the scene!

Last week, I received an update from Dr Tobin at the Mayo Clinic regarding the CLIPPERS repository. As a result of it appearing on this blog, 9 people have signed up so far (including me). Dr Tobin thinks this is an excellent response given the rarity of the condition, and this number of volunteers will allow the team to expand on their originally planned work.


Read other articles in this series at Living With CLIPPERS.

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Monday, 14 April 2014

The CLIPPERS Repository

Spring at Last!
I am really pleased and excited to be able to tell you about a new initiative from the Mayo Clinic to start systematically collecting samples (blood/tissue) and records of CLIPPERS patients from around the world. The idea is that by looking in detail at as many cases as possible there is more chance of finding out about what triggers or causes CLIPPERS. Eventually this could lead to simpler diagnosis and more effective treatment. If you are interested in participating you can find out some more about the project on this new blog page, including contact details for Dr Tobin, the lead investigator.

Read other articles in this series at Living With CLIPPERS.

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