The disease, called melorheostosis, causes severe pain and deformity, and on x-rays makes bones look as though they’re coated with melted candle wax. It is wildly unpredictable and variable, and there is no known cause or cure. In some sufferers, progression of the disease is rapid, while in others it is gradual. Attempts to remove diseased areas surgically can result in new bone growth. Led by Harrogate-based property developer Andrew Carnell; himself a sufferer of the condition, the group has formed the Melorheostosis Association UK, and will use the funds they raise in three main ways: - To publicise the disease and encourage more sufferers and their families to come forward. At the moment there is only a few hundred cases worldwide to work with.
- To fund research by scientists and geneticists; whose expertise and tireless commitment is widely accepted as the only hope for a cure.
- To help the medical profession understand how to spot the disease earlier.
As a totally non-profit making organisation, every pound raised will be used to benefit the people who matter. As an added bonus if, as hoped, its application to become a registered charity succeeds, donations will also be tax-deductible. MAUK can be contacted on 01423 709993, or by email via campaign coordinator Martine Phipps at martine@melo.eu.com. |
