Research is definitely a crucial part of a better future but let’s not forget the present

Two big stories breaking in the media today are attracting my attention – a nice change from yesterday’s need to challenge another tiresome TV series title.

First, overnight news comes in of another incredible face transplant operation, this time on a man in the States, Richard Lee Norris, who had been injured 15 years ago in a shooting accident. The photographs released show the brilliance of today’s surgeons but they also remind me of an Italian man I was in hospital with back in the 70s who had to endure many brilliant conventional operations to repair a similar injury.

And almost simultaneously, news of a new major research programme into the causes and impact of cleft lip and palate. To quote the press release of The Cleft Collective: “cleft is one of the most common congenital abnormalities in the world, affecting 1,200 children born in the UK every year – but little is known about its causes, with opinion divided on best treatments.

So, in case anyone is in any doubt of my position (and Changing Faces’), let me say it again: medical science has a huge part to play in making a better future for people whose faces look unusual for any reason. Gaining the funding to do this, as The Healing Foundation and the Universities concerned have done for the cleft programme, is vital – congratulations and thanks to them…

Just as important for the future too is that conventional well-proven surgical and medical interventions are available and that includes skin camouflage which Changing Faces is now offering directly or in NHS clinics.

All of these options should be available to patients wherever they live – which is sadly certainly not the case in many many parts of the world. Much more advocacy is needed…

But there is something vital missing in this recipe because even if the transplantation research is successful, it will only be for a very few patients worldwide each year. Thousands, millions, will continue to have to live with their condition – their disfigurement – their birthmark, facial paralysis, their asymmetry, for the rest of their lives. And this is difficult.

All of them should have access to what could be described as ‘disfigurement life-skills training’ – a process by which patients (and their families) are helped to adjust to looking unusual in a world that prizes good looks so much and stigmatises not-such-good looks.

What has shocked me about Richard Norris’s story is the revelation that he spent 15 years living as a recluse. This should never happen to anyone. Sadly we hear every week that it does to far too many people… with a Bell’s Palsy or after cancer surgery or after burns or….

Frustratingly, Mr Norris and many others have not had access to the sort of empowerment that Changing Faces specialises in and advocates for – and is now available in some places. In particular, we know how crucial it is to people of all ages who have unusual looks to develop effective communication skills to manage all sorts of everyday social interactions. Going shopping, using public transport, meeting strangers, being in the playground – all these and many other everyday occurrences which most people take for granted can become nightmare scenarios. Here’s a pointer to the sort of help I have in mind.

Richard Norris’s remarkable surgery will make him less conspicuous in his everyday moments – let’s hope he finds the confidence to thrive in them too in the future.

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