Rare disease sufferer takes ‘exhausting’ charity walk to make life better for others
A WOMAN with a rare incurable disease that significantly hampers her lung capacity is completing a personal marathon this month to raise funds for a support charity.
Basingstoke-based Juliet Coffer, 50, has sarcoidosis — an often-misdiagnosed condition which can impact any vital organ. She has set herself a target of walking 3,000 metres in 30 days during Sarcoidosis Awareness Month through laps of her living room.
Originally from Bushey Heath — her parents were founder members of Bushey Synagogue — Ms Coffer said she didn’t know how long she had left to live.
But she was told 15 months ago that in many cases such as hers, where there was no more treatment, anticipated survival time was under two years.
“In the last few months, I’ve made the decision to make life better for the people who come after me,” she explained.
Money raised from her walk will go to Sarcoidosis UK to fund research into a cure and support and guidance to those with the condition.
She was diagnosed with sarcoidosis in 2004 and has seen her lung capacity steadily decline over the years.
Her blood oxygen level dips below 90 per cent when standing up — and below 80 per cent when walking. Blood oxygen levels between 95 and 100 per cent are considered healthy.
“I’ve got used to it,” Ms Coffer said. “If anyone else hit my oxygen levels, they’d probably want to pass out.
“I have to be quite careful. Walking around, everything’s done slowly. If I go into the kitchen, I can’t be on oxygen because you can’t be near gas or
anything flammable. Lots of things have to be planned.”
Ms Coffer is both a computer teacher and operations manager for a website, working from home on flexible hours.
Her charity challenge has left her “absolutely exhausted” but she said she felt better for it, not least mentally. “And people have been so kind. I’ve had such notes of support.”
Ms Coffer’s loved ones have been backing her. “They thought it was a very positive way to turn the situation into something good rather than sitting here and being sad about what’s going to happen.
The difference is I know that my lungs are going to run out’
“The only difference between me and everybody else in the world is that I know that my lungs are going to run out.”
Ms Coffer has raised well over £8,000 and is hoping to meet her £10,000 target by the end of the month.
“Through my whole illness, I’ve always said that you’ve got to have a purpose for living. I was told my condition can’t be treated any more but I don’t want to be a victim.”
Although her life was different from others, “I make the most of it. I don’t see myself as brave, courageous and inspiring. I just see myself as living life in my own way.
“If I can leave the world in a better place through this challenge, then I will have achieved something good.”