Lara Bloom has walked the London Marathon, carried the torch for the London 2012 Paralympic Games, and is constantly on the move around the world raising awareness of rare and invisible diseases.
If you met her you would have no idea that she lives in constant pain.
She is energetic and articulate and she spoke on Thursday to 18 people who have their own versions of the disease she suffers from, Ehlers Danlos Syndromes.
Those people and their families were thrilled to hear Lara talk. The international director of the Ehlers-Danlos Society came to see them at the Temple Grove Care Home near Uckfield.
They could relate to everything she said about her illness and she understood their frustrations about slow diagnosis and difficulty in getting help they needed, particularly for children.
The reason they were able to get together was because two women who met at Temple Grove decided to raise awareness of the Ehlers Danlos Syndromes.
Both suffer from the disease, which affects connective tissues, and before meeting each other had never previously met anyone locally with it. Now they know many more people affected similarly.
Anita Gallemore said the discovery was overwhelming. She was pleased that she and Emma Woolley were now able to share their camaraderie with others – thanks to support from Temple Grove.
A one-off coffee morning for friends and family has grown into a support group with meetings every four to six weeks at the care home for people with Ehlers-Danlos Syndromes.
The first meeting with Lara Bloom as special guest was held on Thursday and the next meeting of the support group takes place on Thursday, July 19. Anybody interested in attending will be welcome. Please call Kerry, Temple Grove welfare officer, on 01825 714400 to let her know if you would like to go.
Lara was presented with cheques and cash totalling more than £1,300 for the Ehlers-Danlos Society by Anita and Emma during her visit.
Those attending said they were pleased to hear her talk and to meet others with EDS.
Fourteen-year-old Katy Clements, from Heathfield, who attended with her mother Alison, said it was great not having to explain how she felt. “Everyone here automatically understands, they get it completely.”
Most of those in the room had Hypermobility EDS – which mostly affects the bones and joints – but Sarah Price, 42, from Uckfield, has Vascular EDS which is generally considered the most severe form of the syndromes and which affects internal organs, arteries and muscles.
She told the gathering that she had a heart attack aged just 36 but was only diagnosed with EDS at the end of last year after it was discovered her sister had the vascular form. Her sister’s daughter and her own 16-year-old daughter have since been diagnosed too.
The psychological effects of diagnosis were traumatic, she said, and she felt there wasn’t enough support for her daughter.
Lara said the Ehlers-Danlos Society was building a global register to answer questions about how many people had the syndromes and why so many more women than men seemed to be affected.
A new criteria for diagnosis had been drawn up and the society was looking for a genetic cause for Hypermobility EDS.
It was investing in further research and people from all over the world were putting forward proposals for that.
What Lara wanted to see was everyone leaving a specialist clinic with a diagnosis being offered care management when they got back home.
She believed any diagnosis, especially vascular EDS, which could kill at any moment, should come with mental health support.