Wednesday, October 15, 2014
by Mark Beckwith
On the unhappy occasion of Christian's passing, I wondered quietly to myself what the incidence of death was among people who had congenital melanocytic nevi (CMN) becuase, well, it just seemed like so many kids were dying recently.
I wondered it quietly to myself until someone else brought it up in the 2000+ member Nevus Outreach Facebook Group.
So I had to think about it again. I'm pretty sure the incidence has not changed. The sad part of being successful in finding more and more people who are affected is that we find more and more cases of people dying from it. However, if we look at it in terms of incidence (i.e. percentage), I don't think it has changed, unless it would appear to have gone down.
But even then, appearing to have gone down does not mean it has actually gone down. If you think about it, back when the Facebook group hit the 1000 member milestone, we celebrated this as a huge success. At that time we had some number of people who died from it. Now that we have hit the 2000 member milestone, have we had twice as many people die from it? More? Less? I don't think we have seen more than twice as many people die from it.
And even if we did see twice as many people, that would not mean the incidence had doubled, it would mean the incidence had remained the same as it was.
It's easy to focus more on the ones who have died, and less on the ones who have not. Someone said it seemed like someone was dying from it once a month. I don't think we've lost one a month. In fact, some of us have been working to compile a list of all the people we can think of who have died, and we could remember 26 deaths in 17 years (that's more like one every 7 months). The world-wide nevus oganization Naevus Global has been working to compile an In Memoriam tribute so we remember the ones who have died (certainly if you know of someone not on the list we would appreciate it if you would let us know. This is still a work in progress. See Heather Etchevers' notes about this in the Facebook Group).
One thing everyone will agree on: we lose too many. My job can be very sad sometimes. Someone else mentioned "I'm hoping the science in this is going to come fast because something has got to be done for our children!" and with that, today's call to action: Science takes major funding. Fast science takes more than that. People reading this who are aware of sources of major funding are urged to contact me so we can work together to pursue them.
My cellphone number is (918) 440-6123. My email address is email@example.com.
There's a reason this is called an orphan disease. Let's do something about that, shall we? We can't do it without your help.