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.

Fast Facts!

Williams Syndrome & the Foundation

  • There are an estimated 3,500 people with Williams Syndrome in the UK
  • Approximately 1 in 18,000 people have Williams Syndrome
  • Only 1 in 30 GPs will ever meet someone with Williams Syndrome
  • The Williams Syndrome Foundation has around 1,000 members.
  • Of these, 720 are parents and 59 are WS adults.
  • The rest of our Membership is comprised of WS family members, benefactors, foster-parents, carers, professional advisors, charity organisations and ex-parents of WS children.
  • All the Trustees and employees of the Williams Syndrome Foundation have a WS person in their life so they understand first hand the challenges that come with the condition
  • WS was recognised as a syndrome in 1961
  • It all started when our Patron, Lady Cynthia Cooper, put an ad and photo in the Daily Telegraph in 1976 asking “Have you seen a child like this?”
  • In 1981, WSF started regional groups around the UK. These are the lifeblood of our organisation, and are run by volunteers from our Membership.
  • In 1982-84, Dr Neil Martin, a Trustee of WSF and a member of our Professional Advisory Panel, collated WS info and the first authoritative paper on WS was published
  • We held our first WSF convention in 1992, and we aim to hold a convention (to which all Members are welcome) every two years.
  • It wasn't until 1993 that the discovery of the micro-deletion on chromosome 7 was made. It wasn't until then that accurate diagnosis of the condition could be made.
  • The Federation of European Williams Syndrome Associations (FEWS), of which the Foundation is an active member, was created in 1999.
  • The Finnish entry to this year's Eurovision Song Contest is a punk band called Pertti Kurikan Nimipäivät. All of the members of the band have learning difficulties and the lead singer has Williams Syndrome.
  • There are Williams Syndrome associations in many parts of the world as this Planet Williams map shows. There are also many areas, especially in Africa, Asia and South America, where there are very few associations.
  • In 2014, the Williams Syndrome Foundation launched a Facebook page, followed this year by a Twitter profile and a YouTube channel. Check them out!
  • Our #SayHello awareness day on 15 May 2015 is the first of what we intend to become a major annual event. Let us know what you'd like to see happen next year.

What's it like living with WS?

By Katy Burrows, a member of the Williams Syndrome Foundation

happy say hello for williams syndrome day to all friends who have ws and those I have yet to meet here is some information on ws and how it effects me

  1. I am very sensitive to everything and anything 
  2. I can't stand loud noises as they are 3 times louder to me 
  3. I spell things the way I think it is spelt 
  4. i am not good at maths at all 
  5. I love animals and people 
  6. I am not good on uneven surfaces and think that if there is one it should have a barrier so j don't have a panic attack 
  7. I have to have medicin for my stomach at nighttime it helps me sleep and eat 
  8. I went into dinile about having a disability for 4 years when I found out 
  9. Sometimes I find it hard to explain what I mean when talking about things 
  10. my mum keeps a book witch has a dictionary of the funny words I say and there meanings 
  11. i started talking about having a disability when I was 22 because I was scered that people wouldn't understand 
  12. I didn't learn the time till I was 18 
  13. I love music so much that I want to become a singer one day 
  14. I am not good at dancing and have the notion to get the moves wrong 
  15. did you know that I suffer from panic attack and depression but I will always have someone to talk to about it if I need to 
  16. I never thought that I would be working at a theatre it is so much fun and I love it
  17. when I was younger I never thought I would be living independently in my own flat I thought that I would have a Cerer to help me
  18. I love my family to bits and my friends as they have helped me through allot of things 
  19. did you know there are different types of williams syndrome I have met people who have more ws problems than I do 
  20. did you know that some of us with ws unfortunately get chucked out and disowned just because we have ws I have seen and herd the story's and it isn't fair at all 

That's all the info for now

Katy Burrows xx

What do we do?

1. Offer support and advice on any aspect of WS (health, education, benefits, etc).

We know how hard it is to deal with a newly diagnosed child because we all have family members with WS. We are your first port of call for any problems or questions you have, whether you are a parent, relative, teacher or doctor. We can direct you to the right source for any specialist support, including our own Guidelines for Parents, Teachers and Doctors.

2. Organise regional forums around the UK for families to share experiences and have fun.

Our regional networks are our lifeblood, making a difference in the lives of people all over the UK. Through them, we run events, activities and subsidised holidays that bring WSF members together, as well as a bi-annual conference for all regional co-ordinators to exchange ideas with each other and our Trustees.

3. Approve and fund research into medical, behavioural and social aspects of WS.

Every year we spend tens of thousands of pounds on medical and scientific studies of WS, leading to better understanding of the syndrome and, most crucially, earlier diagnosis. We actively encourage new research and also share information and ideas with our sister organisations around the world, and our European federation, FEWS.

4. Raise awareness of WS throughout the UK and organise the annual #SayHello Awareness Day.

Williams Syndrome is not widely known or recognised, even by health professionals - only one in 30 doctors will ever see it - and that can lead to misunderstandings, especially due to the "over-friendly" nature of WS people. That's why we now hold an annual Awareness Day based around the slogan #SayHello, encouraging greater recognition and understanding.

5. Encourage fund-raising and ensure that donations - our ONLY source of income - are used to benefit members.

We receive no public funding and are dependent entirely on donations. We are run entirely by a board of voluntary Trustees - all from WS families - and have just two part-time paid staff. The more money we raise, the more research we can fund into WS, and the more staff we can employ to carry out our vital work so that future generations receive more help.  

#SayHello!

POLONIATO on 27th May, 5:15 pm

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

Mette on 19th May, 5:36 pm

Hello....
My name is Mette and I am from Denmark.
My daugther is 15 and she has Williams Syndrome.
Please keep saying HELLO

Irene Rowley on 15th May, 5:08 pm

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!

WSF on 15th May, 5:07 pm

Now Fred Dineage is joining in the fun by saying hello for Williams Syndrome!
https://www.youtube.com/watch?v=KDTq3Rs_Fe0

WSF on 15th May, 3:20 pm

Check out Phillip Schofield and Amanda Holden saying hello for Williams Syndrome! https://youtu.be/QAQM4iiYADQ

WSF on 15th May, 3:19 pm

Check out Phillip Schofield and Amanda Holden saying hello for Williams Syndrome! Phillip & Amanda

WSF on 15th May, 2:05 pm

What an unbelievable #SayHello day we're having. You guys are all awesome. Keep it going...

WSF on 15th May, 1:06 pm

Thank you to West Bretton Junior & Infants School for all your support today!

Louise Fisk on 15th May, 12:35 pm

Ethan & I have been "saying hello" in Kingston-upon-Thames - I found myself dancing in the street to a rock n' roll band!

WSF on 15th May, 12:30 pm

Big thank you to Clayton West Pre-prep School for supporting our awareness day!

Laura Lovell on 15th May, 10:48 am

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

Lou on 15th May, 9:54 am

Big thank you to Incey Wincey's nursery for all their awareness raising today. And good luck to Hannah for her big run tomorrow!

Kath Barton on 14th May, 8:05 pm

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.
Thank You.
Xx

Dave Harris on 14th May, 7:00 pm

Had a contractor visit my office today, he noticed the #sayhello awareness posters it turns out his sister has WS!!

Liz Martin on 14th May, 1:39 pm

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.

Merry Burrows on 12th May, 9:44 am

"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!

Sarah Green on 12th May, 7:45 am

Happy SayHello Day to everyone. Well done everyone involved in getting this up and running! The site is great!

Jon Lovell on 11th May, 10:26 pm

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 sayhello@williams-syndrome.org.uk. Have fun everyone!

Collette Drage on 11th May, 7:27 pm

Hello everyone, I am honoured to know a very special person with WS. Jess is a joy to know and very easy to love

Imogen Lam on 11th May, 2:14 pm

We are really looking forward to this Friday, thank you so much!

Joe Lucas on 11th May, 2:09 pm

Thank you WS Foundation, this site is brilliant!

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