Emily Clarke's life with Fragile X Syndrome - as York city walls to turn blue

On that day, York's city walls will be lit up in blue to mark International Fragile X Day.

It's something close to Emily's heart - because she herself has the genetic condition Fragile X Syndrome.

The syndrome affects about 1 in 4,000 males and 1 in 6,000 females, making it the most common inherited cause of learning disability.

And Emily, 30, from Wigginton, is keen for people to understand the condition better.

"It is so important for people to know more about it, to be more aware of it!" she said.

Emily is bubbly and bright on the telephone, talking with real glee about the city walls turning blue on Monday. "It will be fantastic!" she said. "I have never seen the city walls lit up!"

She's something of a TV star herself. In 2019, she appeared on Channel 4 show The Undateables, and is also the subject of a You Tube video, ‘Fragile Not Broken’, made by her sister Phoebe, who is a TV researcher.

Nevertheless, Emily's condition has had a huge impact on her life, and that of her family.

Phoebe's dad Anthony, who works for City of York Council, says she struggles with social interaction, and easily gets anxious.

Flights upset her - and so do needles. "Having the Covid vaccinations has been really quite difficult!" he said.

Emily at home in York (Image: Supplied)

Emily's condition also affected her schooling. She gets tired and distracted very easily, Anthony said - and also struggles with numbers.

So even though staff at Joseph Rowntree school, where she went, were very helpful - taking her out of lessons for 1/1 sessions, and giving her other support - she left school with very little in the way of qualifications.

She went to York College to study catering - and after leaving there, landed a part-time job in the café at Sainsbury's in Monks Cross. She works there part-time to this day, though she's now in the store's clothing department.

Emily has friends at Sainsbury's, and has also made friends playing tennis - she plays three times a week, with the York Disability Tennis Network.

But she still lives with her parents. That appearance on The Undateables didn't lead to anything. "She decided straight away that there would be no second date!" Anthony said.

When she was growing up, Emily's condition was diagnosed fairly late. It was only when she was 15 that her mum Louise saw some information at her GP surgery about Fragile X, and asked for her to be tested.

So Anthony, like his daughter, is delighted that the council will be raising awareness about the condition on Monday by lighting up the city walls.

Cllr Carol Runciman, York's executive member for health and adult social care, said she was delighted the council could do it's bit to raise awareness.

"Lighting the historic walls blue will serve as our message of support and will hopefully urge people find out more about the condition," she said.

• You can watch Fragile Not Broken, the video about Emily made by her sister Phoebe, on youtube at https://bit.ly/3SPT0EA

What is Fragile X Syndrome?

Fragile X Syndrome is a genetic condition, affecting around 1 in 4000 males and 1 in 6000 females. It can cause a wide range of difficulties with learning, as well as behavioural problems, and problems with social interaction, language, attention and emotions. It is the most common inherited cause of learning disability.

Symptoms tend to be worse in boys and men than in girls and women. That's because the problem is caused by the X chromosome. Men have only one X chromosome. women have two, and usually only one of them is affected by Fragile X.

The condition can lead to a range of difficulties and characteristics, although many with the condition do not experience all of them.

They include:

• learning disabilities, ranging from mild to severe
• behaviour and communication issues, including short attention span, being easily distracted, impulsiveness, restlessness, over activity and sensory problems. Girls with or without learning disabilities may show concentration problems and social, emotional and communication difficulties related to extreme shyness and anxiety in social situations.
• autistic-like features, including avoiding eye contact, anxiety in social situations, insistence on familiar routines and hand flapping or hand biting.

There are also some physical characteristics associated with Fragile X, including a long narrow face.

People with Fragile X often have good imitation skills, are good at visual learning and can have good long-term memories. They are often described as being likeable and sensitive to others’ emotions, and as having a good sense of humour.

Learn more about Fragile X Syndrome from the Fragile X Society at fragilex.org.uk/home