Haverhill artist Clare Hall with Vascular Ehlers-Danlos Syndrome is giving hope to others through painting
A part-time artist, mum-of-two and full-time carer with a rare, life-threatening and incurable condition is using her art to find hope and to give hope to others.
Claire Hall, a former paediatric intensive care nurse at Addenbrooke’s Hospital in Cambridge, will be displaying some of her paintings from her home in Greenwood Close, Haverhill, after signing up to the Cambridge Open Studios, which is being held on July 2/3 and the following three weekends.
Her work, produced over the last two years, tell Claire’s story – a story of hope.
Ten years ago, at the age of 38, Claire was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS), a condition affecting an estimated one in 50,000 to 200,000 people.
Symptoms include thin, translucent skin, easy bruising, characteristic facial appearance, and fragile arteries, muscles and internal organs.
Claire was diagnosed after suffering an arterial dissection – a partial artery rupture – and four years later she had a more serious repeat of the same medical episode.
“Ten years ago, when I was diagnosed” said Claire, “I remember the consultant in London telling me I needed to seriously think about stopping my nursing career.
“Effectively, it was like getting a diagnosis of a ticking time bomb.
“I first of all went through the process of denial because I felt I was fine.
“I carried on nursing but four years later had a second dissection and that one really knocked me because the consultant, I remember him saying to me ‘I don’t know which way you are going to go’ and I said ‘what’s the best case scenario?’ and he said, ‘that you survive’.
“I was looking at my whole stomach being removed because one of my main arteries feeding into my stomach had dissected, so there was no blood feeding through.
“It was touch and go. I had another two arteries and he didn’t know If It would be enough to supply blood to the stomach.”
The year that followed the second arterial dissection was one spent reflecting on her situation and thinking about how best to move forward in life.
Vascular EDS is often inherited from either parent but, as in Claire’s case, it can be caused by a spontaneous genetic mutation.
Claire’s parents do not have VEDS and neither does any of her three siblings.
There is a 50/50 chance that it can be passed on to a carrier’s children, as has happened in the case of Claire’s sons Henry, 15, and James, 12.
James has cerebral palsy and uses a wheelchair as a result of brain damage suffered during surgery when he was four months old. The surgery was necessary because he was born with pulmonary atresia, where the valve that controls blood flow from the heart to the lungs doesn’t form at all.
Two years after her second arterial dissection and with James requiring full-time care, Claire took early ill health retirement in 2017, ending a nursing career going back to 1998.
It was a conversation with her dad that helped make things clear for Claire. “I think my dad said to me ‘you need to think about what’s important’,” she said. “For me there was no question that the children came first and that I need to live long enough and I needed to do everything I can to live long enough.”
Claire is now a lead support co-ordinator for East Anglia with Annabelle’s Challenge, a charity that aims to promote awareness and medical research into Vascular EDS.
Her role is to provide support to those people who have been recently diagnosed with the condition and helped them navigate their way through the options open to them.
Claire’s painting began in earnest in 2020, during a Covid lockdown, and it is a catharsis she wants to use for the good of others, not just herself.
She said: “It is for me to find hope and give hope to others as well and that, I would say, is the essence of what I would try to achieve with my paintings.”
As a child and adolescent, Claire also had to travel from Sao Paulo in Brazil, where she was born and raised to British parents, to Paris on numerous occasions to have facial surgery as a result of being born with a cleft face.
For a full schedule of participating artists at the studio and more information go click here.
Claire will open her studio on July 2/3 and 16/17 from 10am-5pm each day.