CAMBRIDGE, England, May 7, 2019 /PRNewswire/ -- Today sees the launch of Myelopathy.org, the first charity dedicated to one of the most common, yet under-diagnosed neurological conditions, degenerative cervical myelopathy or DCM. This initiative was founded by neurosurgeon Mark Kotter, clinician scientist at the University of Cambridge, and Iwan Sadler, who set up an on-line community for people with DCM.
DCM is caused by arthritis in the neck that can compress the spinal cord, leading to, in effect, a "slow motion spinal cord injury." Recent research by Mark Kotter's team suggests that as many as one in 50 adults may be affected. "If you haven't heard of myelopathy, you are probably in good company," he says, "yet it may affect up to a million adults in the UK."
"I will never forget the feelings of fear and isolation I felt when I was diagnosed in 2014," says Iwan Sadler. "This prompted me to set up one of the first Facebook community pages for the condition, to make sure no one else would have to go through the same emotional rollercoaster."
Mark Kotter and his colleague Ben Davies created an information website, myelopathy.org in 2017. A meeting they held in Cambridge for patients, neurosurgeons and researchers interested in DCM led to the first joint initiative with Iwan: a global on-line survey of people with myelopathy. This gave a unique understanding of the real-world experience of patients and supporters.
"We were shocked at the results," says Ben Davies. "On average it takes more than two and a half years for people to be diagnosed; up to a third wait more than five years. This can result in increased disability and suffering, as well as a heavy financial burden on health and social systems."
Currently, surgery is the only effective way to relieve pressure on the spinal cord in the neck. Early symptoms are often subtle and may include numb and clumsy hands, impaired balance, and urinary problems. If left untreated, DCM can lead to loss of control of hands and bladder function, and mobility. Myelopathy.org is asking how DCM can be recognised and treated sooner. Myelopathy is now recognised as having one of the worst impacts on quality of life.
Myelopathy.org has also shown the importance of the patient perspective. "Our members said that their number-one priority is pain," says Iwan. But, according to Ben Davies, only a fraction of studies measure pain and very few have asked how this can be addressed.
The launch of Myelopathy.org, launched as an event in London this evening, and has attracted top representation from the NHS, policy-makers, research councils, charities, health care providers and patients. "Today's event shows how we can bring together a grassroots initiative and world-leading researchers to improve the lives of millions of patients worldwide," says Mark Kotter.