Some quick snippets this week.
- I had some informal feedback about my recent MRI. Apparently no sign of any new lesions and only a small bit of enhancing tissue (i.e. a bright spot) which has been there in all the scans so far. So no change.
- I got excited when I found out my case is being discussed at a big MRI conference in the US next week. It turns out it will probably just be one or two pictures in a Question and Answer educational session for radiologists and imaging scientists rather than a full conference paper but hey-ho!
- A new US/UK report on the impact of rare diseases on carers and sufferers was released last week; you can read it on-line here. In many ways the results aren't too surprising. For instance "Nearly all (96%/98% in the UK/USA) physicians stated more office vists are required to diagnose a rare disease patient". Still, I think that actually recording these things provides a baseline for policy-makers to look at and hopefully make better provision for those affected by rare diseases. At the moment CLIPPERS is still too rare to make it into the list of diseases in the report - it should be inserted between "Chromosome 9p deletion" and "Chronic lymphocytic leukemia" in the UK listing, but we're still too rare for that.
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.
