Monday, 22 July 2013


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


  1. We were there on Saturday DG. Sent our 6 kids off to the zoo whilst me and the missus had the most wonderfully calm day listening and learning in a nice cool lecture theatre. Can't remember when I was last so chilled!
    You're so right about the bond within the PWS community. It was great to mix with other parents, caregivers and scientists who just know what things are like without all the usual explanations required when meeting new people. The party on the Saturday night was a blast. People from 33 countries mixing and mingling, lots of laughing, wobbly country dancing (that was me mainly) and international sign language (our little one excelled at that). I was hoping I'd meet you there so I could tell you in person how much I enjoy your blog which invariably raises a smile or two as I eat my sandwich at my desk. We're in Hitchin, so maybe we'll get the chance to hook up at a local PWS get together some time. I'd love to chat.
    Very best wishes,

    1. I'm just taking in the throwaway phrase: "sent our 6 kids off to the zoo". Six is a big number - I'm impressed, and slightly frightened by the thought!
      Sorry I missed you Kerry ↑ and Rachel ↓. We were away all last week - we'd already booked our holiday by the time I twigged it would clash with the conference, so I was only able to go on the Sunday and it was all a bit of a rush.
      Hitchin is very close to us - I'm thinking a summer holiday meet-up could perhaps be arranged? If you want to contact me, you can email me through 'Bookface' - check out the Prader Willi Syndrome Association UK official page on Facebook, and look in the Recent Posts By Others column...

  2. Same as Kerry. Wish we'd have known that Mamma Drake was in the house. Would have been great to meet up. It was a bit fab wasn't it? You must speak at the next one. In Toronto *checks Airmiles*

  3. Mamma Drake has a certain ring to it. I sound like a soul singer - I like it!
    I was discussing with a friend on Sunday how we ought to start saving to go to the next conference, which we were hoping would be in Barbados ;-) Canada sounds good, though. *dusts off piggy bank, sticks in first fiver*

  4. I ummed and ahhed about if I should attend the conference. Our daughter is only 12 weeks old and was diagnosed 6 weeks ago and we decided that it was all abit too raw. I am greatly heartened by your blog and sounds like in future years the conferences will be a wonderful thing to attend. We too are local to you in Letchworth-I think your friend Clare mentioned me to you-and would love to meet up if you fancied it. Your blog has filled me with hope these last few weeks, Hannah

    1. Oh, I think you made the right decision, Hannah, and it would have been a bit overwhelming for you at this stage.
      I'm glad my blog has given you hope, that's heartening for me, too!
      Clare hopefully passed my details on to you - get in touch whenever you like.

  5. I was lucky enough to go to both days of lectures, have to say my mind was totally BLOWN!! Fantastic to feel like we are part of something bigger than our day to day struggles and triumphs with PWS. Felt so lucky and happy to be there! Our daughter is 2 years and 3 months and has been on the receiving end of a very motivated mother this week. Poor little thing has endured boot camp style physio, bedtime stories including the research on Caralluma fimbriata and an influx of berries into her diet. She is faring better than all our healthcare professionals though, we will get that repeat sleep study before September!! Hope everyone is feeling buoyant and motivated, I certainly needed that lift. .anyone wanting to meet up we live near Saffron Walden in

  6. Also Carolyn, great to meet you again and still big fan of the BLOG! thank you. Xx

  7. I've been reading your blog from afar since my son jack was diagnosed a year & a half ago. Was just catching up on your posts & came across this one & the comments. We too are based in Herts (Stevenage) & it would be great to arrange a meet up of everyone. We met Kerry & his lovely family recently! My husband attended the thurs & fri of the conference but I wasn't sure I was ready for the family meet up & seeing lots of people in one go (I hope that doesn't sound too strange!)
    I'd also like to say I have found your blog heartwarming & funny at a time that has been scary & worrying!

    1. Thanks, Natalie.
      Looks like there's a right gang of us all less than an hour apart from eachother. I'll come up with some dates and work out a way of us all getting in touch.
      If anyone is on Twitter, and can DM me with their email address, that might help - I'm @drakeygirl. Or find me on Facebook (I'll try to remember to check it) - Carolyn Drake.