Two sisters were forced to give up on their dream jobs after being diagnosed with a rare genetic condition.

Arwen Waters and Nathalie Sharpe thought the pain they were experiencing was normal and had been told it was likely just growing pains.

But in reality they were both suffering from Ehlers-Danlos Syndrome (EDS), an incurable genetic condition.

Arwen, who grew up in Gillingham, was diagnosed with EDS in February 2021 as their pain started to get significantly worse after having glandular fever and Covid-19 in the space of a few months.

The 21-year-old suffers from debilitating joint pain, extreme tiredness, and dizziness, has an increased heart rate, is vulnerable to infection and uses a wheelchair.

They have also been diagnosed with fibromyalgia and say their joints often dislocate without them noticing.

Arwen said: “I have always had pains and aches but I thought that was normal as no one told me otherwise.

“It is like waking up and putting on random selection. What symptoms will I wake up with today?

“It can really affect everything. It is just my daily life.”

Arwen danced since they were two years old but because of the amount of pain they are in has been forced to give up on their dream job in the performing arts.

They added: “I have been a dancer and was trying to make that my career, but now I am a wheelchair user who cannot really walk.

“It meant I had to accept and give up performing arts as it is not viable for my body.

“Even little amounts of exercise can shut my body down for days or weeks and I cannot get out of bed.

“To lose that felt quite big but I knew it was what I needed to do.”

EDS is a group of disorders caused by genetic changes that affect connective tissue which all have different features such as joint hypermobility and skin hyperextensibility.

Each type has a different prevalence rate, however, hypermobile EDS is the most common and it is thought to affect at least one in 3,100-5,000 people.

Arwen added: “Being at constant war with your body and not knowing why that is happening is awful.

“However, knowing what it is, being diagnosed with it and having an explanation as to what it is wrong means a lot.

“Also knowing it is happening to other people makes a real, big difference.”

Arwen's sister, Nathalie Sharpe, was only diagnosed with EDS last November after discussing Arwen’s symptoms and realising she too may have it.

The 27-year-old said: “Everyone says as you get older you get more pain so that is what I thought at 14 years old. The fact it was not normal did not cross my mind.

“When I look back, I had symptoms since I was 11-years-old. I was told it was growing pains and I thought they just never went away.

“With the diagnosis, it means I know why I cannot do things like other people and that is OK. It is not because I am lazy.”

The teacher also suffers from joint pain and fatigue and also has fibromyalgia, a long-term condition that causes pain all over the body.

Both received their diagnoses as adults which is quite common for EDS as it takes on average 14 years from the onset of symptoms to diagnosis.

Their mum Louisa Waters originally thought her daughters might have arthritis and explained it was hard for them to get any answers.

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

“It has been heart-breaking, and the Ehlers-Danlos Support UK group has been fantastic in terms of finding information and support.

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

The 55-year-old, who works as a children and young people’s therapy manager at Buckland Hospital, in Dover, is holding a cabaret evening in aid of the Ehlers-Danlos Support UK charity.

She is a member of St Paul’s Church in Parkwood and nominated the charity as one of the three charities for the church to support this year. You can donate here.

The cabaret evening will take place at the church on Saturday, August 17, 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.