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For nearly 20 years, Craig Davidson spent almost every waking minute in pain.
At the age of 17, the former chef noticed a swelling in his ankle, which at times would blow up to the size of a rugby ball.
After 13 years of tests, Mr Davidson was diagnosed with primary lymphoedema in 2010.
Now 38, the father from Mote Road, Maidstone said: “For 13 years doctors diagnosed me with every other possible thing, it was a case of ticking boxes until they diagnosed me correctly.
“I felt like a guinea pig, trying out different medication when I knew they wouldn’t work.”
Lymphoedema is caused by a genetic problem with the lymphatic system, a network of vessels and glands which fight infection and drain excess tissue fluid.
The condition causes painful swelling of the limbs, at times leaving a person unable to move, but there can be other problems.
The father-of-two said: “For me there used to be a lot of anxiety trying to explain why my ankle is the way it is, when I didn’t know.
“I would never wear shorts, I’d keep my legs covered all year just to avoid the questions.
“Now I know the condition it doesn’t worry me as much.
“Every day is different, it can depend on if its too hot or too cold, or how much I move, everything effects the swelling.”
Primary lymphoedema affects one in every 6,000 people.
Secondary lymphoedema is more common, and can be caused by cancer treatment or infection.
Mr Davidson now looks after his six-year-old daughter full time, having quit work in 2015 after the daily pain of working grew too much to bare.
He said: “I can’t run around with my daughter, she’s limited to what I’m able to do.
“When I was young I was quite active, then I became a chef. “Working on my feet all day, I’d go to sleep in pain and wake up uncomfortable.
“I think my job aggravated the condition. I’ll never know if an earlier diagnosis would’ve made a difference.
“That will play on my mind until the day I pop my clogs.”
“There is support out there, but there’s nothing in Maidstone, there needs to be greater awareness and support for the people out there living with it.”