People with Prader-Willi Syndrome are extraordinary. I forget sometimes just how extraordinary, and then a day like yesterday comes along.
The extra-extraordinariness manifested itself in a lecture hall at a conference, in the hallowed surroundings of Fitzwilliam College, Cambridge University (a place I was too thick to study at, but where I can now say I have studied, even if it was just for one day).
I was there attending the 8th International Prader-Willi Syndrome Organisation Conference. I could only go for Sunday's programme of events, but I’m glad I made it. I’ll try to share some interesting things I learned from various presentations when I’ve had chance to digest the information. For now, I just want to tell you this...
I can still feel my skin tingling. And no, that’s not just the effects of this country's recent, inexplicably lengthy bout of glorious sunshine. I may have needed Factor 50 protection, but it wasn’t to shield me from the sun’s rays, it was to stiffen my upper lip and stop me blubbing.
What got me wobbling was the glorious sight of a bunch of adults with PWS, of varying shapes and sizes, and differing degrees of eloquence and ability, standing up and speaking in front of a lecture hall full of scientists, doctors and parents. Some had taken part in clinical trials and were there to speak about this experience. Others talked more generally about their lives, living at home or in group homes. An Australian man’s rambling, stuttering, childlike glee in telling us of his love of walks and breakfast was a joy to behold. An Irish fella’s pre-emptive and then subsequent, laughter at his own joke led to a mini Mexican Wave of infectious giggling in the audience. One woman’s fluent, structured, matter-of-fact description of the sadness of her life and how she never felt she fitted in anywhere was heartbreaking. A fourth extraordinary PWS delegate spoke about how her behaviour had improved after the implant of a tiny pacemaker-like stimulator, which worked on the vagus nerve in her neck, so much so that she felt it had played a huge part in enabling her to have the ‘greatest day of her life’ - her wedding day.
The PWS on display today magnified my conflicting thoughts and feelings about the syndrome, took my heart in its fist and squeezed. The more I learn and the more I see of PWS, the more amazed I am at the power it has to thrill you, chill you, surprise you, entertain you, sadden you, slap you, tickle you, and astound you.
These people with PWS share so much and yet lead wildly different lives and are as disparate as they are alike. The parents who were there, and who came from very different parts of the world, share an extraordinary bond, too. It’s a link none of us chose, but it’s steely strong.
Song is The Decemberists - I Was Meant For The Stage