What is Williams-Beuren Syndrome?

 3rd May 2017

Learning disabilities, as a term, is something of a velvet curtain that hides the hugely complex nature of what having a learning disability actually means.

It also conceals the different kinds of learning disabilities and what the different challenges the condition represents to the individual.

Williams -Beuren Syndrome is one such diagnosis.

You’d be forgiven if you haven’t heard of it as it doesn’t get much coverage in the same way Down’s Syndrome or Asperger’s Syndrome does.

It may surprise you to know that 1 in 18,000 people in the UK have Williams-Beuren Syndrome, which works out at around 3,561 people in total in the UK.

Unlike a lot of other conditions, however, it’s a rare genetic condition that isn’t hereditary in nature. As far as anyone can tell it’s nothing more than one of the (seven on average) genetic mutations everyone is born with.

However, instead of being able to roll your tongue or being double jointed, Williams–Beuren Syndrome impacts on an individual’s ability to learn. This means it takes them longer to walk, talk and develop social skills.

There are also certain physical characteristics that those with Williams-Beuren Syndrome share. These can include a wide mouth, a pronounced bottom lip and high rounded cheeks.

They can also often be very talkative and friendly.

Due to the complex nature of the Williams-Beuren Syndrome, it can be difficult to definitively say how best to support someone with the condition.

Anxiety and depression are common challenges in later life so monitoring their mental health is an advisable step to take. Mental health issues can sometimes be hidden or appear minor due to the strong speech and social skills displayed.

Other challenges can include poor motor skills and spatial awareness. This can make them seemingly clumsy and therefore individuals can be poorly treated or discriminated against because of this.

They actually just need slightly more support when completing tasks that require a higher than normal degree of coordination.

Broadly speaking a multi-disciplinary approach proves the most effective when supporting someone with Williams-Beuren Syndrome.

Because the situation can be quite changeable throughtout the indiviudual’s life, both from a physical and psychological stand point, working with doctors and mental health professionals is important.

However, because indivudals with the condition are capable of living a full and long life with varying levels of support, their life goals and a means of achieving them needs to be factored in as well.

There is also no reason at all why they can’t enter into relationships and have a long term partner.

The aforementioned talkative and social nature can, unfortunately, make it hard for individuals to relate to others as they don’t always pick up on conversations prompts or their over exuberance can make those without understanding, uncomfortable.

Supporting them in developing social skills is an important part of their development. Various support groups exist with this specific outcome in mind.

Because no two individuals with Williams-Beuren Syndrome will display the same challenges, it’s important to identify areas of strength, particularly within social setting or activities, and encourage them to develop these further.

For example, musicality or a keen interest in music is a common trait in individuals with Williams-Beuren Syndrome so channelling this constructively is a positive way of It also provides them an outlet to express their emotions as this can sometimes be a challenge.

The most important thing to understand about Williams-Beuren Syndrome is, with the right support, the individual can lead a perfectly happy, normal and full life.

If someone you care about has Williams-Beuren Syndrome and you could do with advice or would like to discuss support for them, contact us today and we will be happy to help.

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