‘My daughter was a dancer – now they need a wheelchair’

A mum is fundraising for a charity that has supported her two daughters, whose lives have been turned upside down by a rare genetic condition.

Louisa Waters, who works as a children and young people’s therapy manager for East Kent Hospitals, is holding a cabaret evening in aid of the Ehlers-Danlos Support UK charity. It is a way of saying thank you for the help they have given her family since both Arwen and Nathalie were diagnosed with Ehlers Danlos Syndrome (EDS).

The condition comes in different forms, and for some can have only mild effects, but for both Arwen and Nathalie it has had a massive impact on their lives.

Louisa, 55, who lives near Gillingham, said: “Both were involved in performing arts and planned careers as an actor and a dancer, but that has all had to change since their diagnoses.

“Arwen planned to study musical theatre at university and go on to perform on stage but they are now predominantly in a wheelchair.

“It has been heart-breaking, and the Ehlers-Danlos Support UK group has been fantastic in terms of finding information and support, so this is our way of giving something back.”

EDS is genetic, and affects both Arwen, 21, and Nathalie, 27, in similar ways. They both have debilitating joint pain and fatigue and have been diagnosed with fibromyalgia as well as EDS. Both received their diagnoses as adults which is quite common for EDS – it takes on average 14 years from the onset of symptoms to diagnosis.

Louisa believes Arwen’s rapid deterioration could have been triggered after they had glandular fever and Covid in the space of a few months. They also suffer from dizziness and an increased heart rate and are vulnerable to infection. Nathalie is a teacher but is finding it hard to manage the pain so is now considering switching careers.

Louisa said: “The symptoms can seem random and it is hard to get a diagnosis. In some cases, people think they are making it all up.

“Arwen has always danced – they used to dance up and down the aisle in church when we were singing – but now they are in a wheelchair.

“Their lives are completely different to what they were anticipating but the charity has helped us understand, and meet people in the same situation.”

Louisa is a member of St Paul’s Church in Parkwood, and nominated Ehlers-Danlos Support UK as one of the three charities for the church to support this year. The three will share 10 per cent of the church’s income over the year, and members can also hold fundraising events.

The cabaret evening will take place at the church on Saturday, 17 August, and will feature music and drama, including performances from Louisa, Arwen and Nathalie.

Tickets cost £8 and are available on the door. The performance starts at 7.30pm.

You can also donate online, at https://www.justgiving.com/page/louisa-waters-1718380315532