Living With CLIPPERS: Rare Disease Day 2016

In just over a week it is Rare Disease Day 2016. "The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives." This can only be a good thing, although I must admit to being a bit out of my comfort zone with these mass movement things. However, they have an important role to play, especially for conditions as rare as CLIPPERS.

Rare Diseases UK have information about the scale of the problem where I am located - but the numbers translate more or less to most other places. The most important relationship is that although there may be very few sufferers of any particular rare condition (even down to a handful), the number of identified rare conditions is so large (around 7000) that (in the UK) 7% of the population will be affected by a rare condition at some point in their lives.

CLIPPERS seems to be a rare condition amongst rare conditions at the moment. Four-fifths of rare diseases have a genetic component and there is no evidence of that (so far) in CLIPPERS. Three-quarters of rare diseases affect children and although there are a few reports of CLIPPERS in children, most reported cases seem to be in adults, with some hints that it is more prevalent when heading towards middle age. According to Rare Diseases UK, a rare condition may affect up to 30,000 people in the UK, but I doubt there are more than 20 diagnosed cases of CLIPPERS here at the moment. Please prove me wrong on this if you know different and I'll report back here.

So, like it or not, to be diagnosed with CLIPPERS is to be a member of a small and exclusive club, and unless CLIPPERS turns out to a be a "missing link" which unlocks the mysteries of other, better-known, conditions, then it is cross-community campaigns like Rare Disease Day which can do the most to push the agenda of CLIPPERS as a rare disease in the wider world.

P.S. I received a nice graphic - posted below - from Cameron Von St. James, a mesothelioma cancer caregiver and advocate. Cameron works with the Mesothelioma Cancer Alliance to spread awareness of another rare disease, Mesothelioma, caused by exposure to asbestos, as well as all rare diseases.