Why Joan is one in a million
PUBLISHED: 12:28 20 April 2006 | UPDATED: 10:01 06 May 2010
WHEN pensioner Joan Locke wakes up tomorrow, her limbs will ache and the marble-sized lumps on her right forearm will feel like burning coals. At 71, Joan, who lives in Stevenage, is Britain s oldest sufferer of one of the world s rarest and least underst
WHEN pensioner Joan Locke wakes up tomorrow, her limbs will ache and the marble-sized lumps on her right forearm will feel like burning coals.
At 71, Joan, who lives in Stevenage, is Britain's oldest sufferer of one of the world's rarest and least understood bone diseases.
She was diagnosed with melorheostosis, or melo for short - in 1971 when hardly anyone knew the disease even existed.
Although she became something of an overnight sensation to which the medical profession flocked for a chance to see a new and incurable disease, the excruciating pain and increasing disability that came with it gave Joan a different agenda - finding help.
"We all laughed when the lumps first started appearing on my arm shortly after my 26th birthday - but the funny side quickly wore off once the horrendous burning began to move around my arm," said Joan.
What no one knew at the time was that each sensation of burning was actually a melo flare-up - a period when the disease makes new bone and deposits it where it's not wanted, usually around joints.
When pain-relief injections failed to even dent her discomfort, Joan's crusade took her from doctor to doctor.
Each greeted her condition with a shrug of ignorance and indifference, until one London professor diagnosed her condition as melo after seeing a set of X-rays on which the disease left its now feared calling card - the look of dripping candle wax.
"As well as all the top doctors who came to study me, I was visited by dozens of medical students, who were dragged around to see what was then believed to be the first case of melo in the country. I felt like a one-woman freak show," added Joan.
Despite the diagnosis and subsequent attention of the UK's top medical brains, none of the treatments helped to combat Joan's discomfort. Even surgery on the affected bones - now considered a last resort - failed.
When three lumps appeared on Joan's head, she grew increasingly anxious, and without any sign of either a cure or fellow sufferer she not only grew fearful of what might lay ahead for her but also feared the worst.
"The pain was so awful that I thought the disease was spreading around my body and would do until it killed me," added Joan. "It was made even worse by the fact that no one else seemed to have melo and none of the doctors had any idea how to treat it."
Today, Joan continues her daily battle against the pain and suffering of melo. Her lumps still burn, her joints still ache, and her disability often makes it impossible for her to even open doors or lift a kettle.
But as least she's no longer alone.
Thanks to the efforts of fellow melo sufferers - who have come forward following last year's launch of the UK Melorheostosis Association - Joan now has the comfort of information, case histories and a medical profession which seems hell bent on finding a cure for the disease.
"When I heard about the melo association, it felt like someone had switched on a bright light after 50 years in darkness. Words can't explain how comforting it is to know I'm not alone and that there might, after all, be hope."
l Details of the work of the association can be found at its web site www.melo.eu.com
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