Waking up the world to the people with the 'friendly gene'
Hundreds of children with a rare genetic condition could be going undiagnosed across the UK because doctors don’t recognise the symptoms. An estimated 3,500 people in the UK have Williams Syndrome, sharing facial characteristics and complex physical and mental problems. Its most notable feature is that they are all naturally extremely outgoing and chatty.
This week a nationwide campaign is launched to spread awareness of Williams Syndrome, encouraging people to join them in saying ‘Hello’ to people they meet on Friday 15 May. “WS people are said to be overly friendly which makes them very socially vulnerable,” explained Merry Burrows, Chairman of the Williams Syndrome Foundation. “But perhaps other people are not friendly enough towards people with learning disabilities. That’s the point of our #SayHello campaign on Friday.”
The unusual and randomly occurring condition is caused by a chromosome defect thought to affect around one in 18,000 people and therefore many professionals do not know of the syndrome, or how to recognise it.
Louise Fisk, a Trustee of the Foundation and mother to a child with WS, said: “My little boy, Ethan, was diagnosed with Williams Syndrome when he was 13 weeks old. We were incredibly lucky that the paediatrician he was assigned to after he was born had seen the condition before and therefore immediately recognised the symptoms. Importantly this meant that the hospital was quickly able to diagnose his heart condition and he has since had two life-saving operations. He’s now a very energetic, friendly and happy four-year-old.”
Others are not so lucky with early diagnosis. Ian Metherell did not discover he had the syndrome until he was introduced to the Foundation in middle age. "Lots of people have WS but don't know it,” said Ian, 64, who was diagnosed at the age of 42.
He had “felt different” throughout his childhood but his parents believed he would “grow out of it” and his eloquence, a common trait of the syndrome, meant that others did not detect his condition. “I don't want anybody else to wait so long to be diagnosed,” adds Ian, whose GP would not even test him for WS because he had never heard of it. I don't want anyone else to be heartbroken or not have a family because they're different. Personally I would have rather been diagnosed earlier than later. Life would have been easier and a lot less sad for me."
People with WS are unlikely to lead fully independent lives but, with the right support, can achieve great things. A natural ear for music, perfect pitch and memory skills have brought some to public attention.
This is an edited version of a press release, written by Tim Cooper, issued by the Williams Syndrome Foundation on Monday 11 May 2015.
Bonjour à tous, Notre fille LYLA est Williams et a été diagnostiquée à 6 ans. Elle apporte tous les jours sa part d'humour et de bonne humeur dans notre famille : elle est extra-ordinaire. Merci pour votre site et votre travail pour mieux faire connaître le syndrome aux professionnels de santé tout comme au monde... entier ! Bien amicalement à tous, Véronique, Marc, Sarah, Thomas et Lyla
A rough translation from the WSF for people who's French is a little rusty!: Hello everyone, Our daughter LYLA has Williams and was diagnosed at 6 years old. She brings good humor to us every day as a family: she is extra-ordinary. Thank you for your site and your work to increase awareness of the syndrome to health professionals across the whole world ...! Best wishes to all, Veronique, Mark, Sarah, Thomas and Lyla
My name is Mette and I am from Denmark.
My daugther is 15 and she has Williams Syndrome.
Please keep saying HELLO
Hello, all Williams Syndrome people and their relatives. My son is 45, diagnosed at 12 years of age. Because he was brought up in Brazil as a missionaries child. He is independent to a great degree. He reads and writes two languages. Speaks perfect Portuguese and is a super addition to our family. Am so glad you are having an awareness day, yours, Irene Rowley PS. ...He sang a solo last year for the first time ever and it was beautiful!
Now Fred Dineage is joining in the fun by saying hello for Williams Syndrome!
Check out Phillip Schofield and Amanda Holden saying hello for Williams Syndrome! https://youtu.be/QAQM4iiYADQ
Check out Phillip Schofield and Amanda Holden saying hello for Williams Syndrome! Phillip & Amanda
What an unbelievable #SayHello day we're having. You guys are all awesome. Keep it going...
Thank you to West Bretton Junior & Infants School for all your support today!
Ethan & I have been "saying hello" in Kingston-upon-Thames - I found myself dancing in the street to a rock n' roll band!
Big thank you to Clayton West Pre-prep School for supporting our awareness day!
Overwelmed by the efforts of Charnwood Nursery in supporting the awareness day with 'say hello' activities planned for all the children and cakes and information for the parents to take away. So proud of all my supportive friends and family in spreading the word in their different ways x x x x
Big thank you to Incey Wincey's nursery for all their awareness raising today. And good luck to Hannah for her big run tomorrow!
Fantastic to see more awareness for WS. Our grandson Max is a dream and a blessing, but it would make everything a lot easier if more people 'got it', if they understood and hopefully after tomorrow they will.
Had a contractor visit my office today, he noticed the #sayhello awareness posters it turns out his sister has WS!!
Gill and Philip Thomas are going to be interviewed on BBC Radio Coventry & Warwickshire on Monday, just after midday AND the Lord Mayor of Coventry is going to visit our Street Team on Broadgate and post photos on her FB page www.facebook.com/coventrylordmayor.
"Say Hello" works! As a direct result of Katy's interview for Aboutmyarea, within 3 days a little girl in Portsmouth is being tested for Williams Syndrome!
Happy SayHello Day to everyone. Well done everyone involved in getting this up and running! The site is great!
Can't wait to see what everyone is getting up to on Friday. Don't forget to share your stories and pictures with us at email@example.com. Have fun everyone!
Hello everyone, I am honoured to know a very special person with WS. Jess is a joy to know and very easy to love
We are really looking forward to this Friday, thank you so much!
Thank you WS Foundation, this site is brilliant!