Today sees the official launch of Myelopathy.org, a charity dedicated to one of the most common, yet under-diagnosed neurological conditions. The charity is the brainchild of Dr Mark Kotter, neurosurgeon and clinician scientist at the University of Cambridge, who works on a disorder known officially as Degenerative Cervical Myelopathy.
If you haven’t heard of myelopathy, you are probably in good company. Myelopathy is likely the most under-diagnosed neurological condition, yet it affects as many as a million adults in the UK.
Myelopathy is caused by arthritic changes affecting the spinal column of the neck. Because of the close proximity, these can exert pressure on the spinal cord and trigger a “slow motion spinal cord injury”.
“If you haven’t heard of myelopathy, you are probably in good company,” said Dr Kotter. “Myelopathy is likely the most under-diagnosed neurological condition, yet it affects as many as a million adults in the UK.”
The onset of myelopathy is often subtle: symptoms include numb and clumsy hands, imbalance, and urinary problems. When left unattended, it can progress with patients losing control of their hands and bladder, and becoming unable to walk. Myelopathy is now recognised as having one of the worst impacts on quality of life.
The actual number of patients who suffer from this condition remain unclear. Recent research by Dr Kotter’s team who analysed existing spinal MRI studies, indicates that as many as one in 50 adults may be affected.
Treatment options for myelopathy are limited. The only form of treatment that is effective consists of surgical decompression of the spinal cord. Despite this single option, the management of myelopathy patients remains highly divergent across the globe.
To raise awareness of myelopathy and to address gaps in our knowledge of the condition and how best to treat it, Dr Kotter and colleague Ben Davies, together with Iwan Sadler, a myelopathy-sufferer, have launched Myelopathy.org, a charity that aims to give patients a voice and effect change.
The charity has grown out of an information website created by Dr Kotter and Mr Davies. Today, Myelopathy.org celebrates its official launch as the first charity dedicated to the condition at an event in the House of Lords hosted by Lord and Lady Carter of Coles. The launch will gather together top representatives from the NHS, politics, research councils, charities, and health care providers.
“Today’s event shows how research can impact not only academia and industry, but inspire grassroots initiatives that bring together individuals in order to tackle important issues,” said Dr Kotter. “It is also a clear demonstration of the difference that the University of Cambridge can make to the lives of millions of patients worldwide.”
Previously, Dr Kotter and colleagues from the Spinal Cord Injury Knowledge Forum in the AOSpine, the world-largest spine surgeon network, brought together patients, health professionals including physicians, surgeons, physiotherapists, allied health professionals, and researchers to develop the first clinical guidelines for the treatment of myelopathy. The guidelines recommend monitoring the condition at early stages, but for moderate or severe forms, as well as any signs of deterioration, considering urgent surgical attention.
The guidelines have been welcome by health care professional and sufferers around the globe, recognised by multiple national and international bodies, and are being implemented on a world-wide scale. As the guidelines also determine in which cases surgery is not appropriate, they are expected to benefit not only those that require treatment but also protect individuals from unnecessary surgery. This is a prime example of how research can translate rapidly and have positive impact on a global scale.
In the largest ever survey of myelopathy patients world-wide, carried out on the Myelopathy.org website, Dr Kotter’s team asked sufferers questions, including: how long have they suffered from myelopathy? How long did it take to be diagnosed? Did they undergo surgery? At what stage is their disease? And, how does it affect their quality of life? Would they be interested in participating in research? And what would be their number one research priority?
“The results of our survey were shocking: on average it takes more than two and a half years to be diagnosed,” said Mr Davies. “As many as a third of patients have to wait more than five years. These delays can result in increased disability and suffering on an individual level, and most likely also to heavy financial burden on health care systems.
“We need to look at why the condition is not recognised earlier and how this situation can be changed. Are there gaps in knowledge amongst health professionals, or in the health care system?”
The bulk of clinical research so far has been conducted on surgical approaches to myelopathy, but this research did not provide any firm conclusions. One of the reasons is that the primary outcomes of studies in myelopathy vary considerably. This renders studies difficult to compare.
In addition, researchers often fail to take into account the patient perspective. For example, patients responded to the survey that pain is their number one priority; however, only a fraction of studies measure pain and very few have asked how this can be addressed.
As well as celebrating the launch of Myelopathy.org, today’s event also announces RECEDE (REgeneration in CErvical DEgenerative) Myelopathy, the first regenerative medicine trial for the condition. The clinical trial is sponsored by the National Institute for Health Research and is being carried out as a joint UK-collaboration. It is expected to begin later this year.