Myelopathy.org, which was founded in 2017 as a collaborative information and support initiative for those affected by degenerative cervical myelopathy (DCM), has announced the launch of its new website which it says offers a wealth of contemporary and evidence-based information that can help to complement the routine care of those with DCM, but also to help raise awareness among non-specialist healthcare professionals.
Myelopathy.org brought together the work of academic neurosurgeon, Mark Kotter (Cambridge, UK) and Benjamin Davies (Cambridge, UK), a trainee academic neurosurgeon with the Myelopathy Support Facebook group which was set up by Iwan Sadler who has been living with DCM since 2014.
Kotter and Davies initially set up Myelopathy.org to better engage with people who have DCM after they both become interested in the condition through their research into regenerative medicine and development of UK NHS care pathways. Sadler was diagnosed with DCM in 2014 and feeling increasingly alone and frustrated by the lack of information and support he developed his own awareness campaign and one of the first Facebook community pages for DCM.
Eventually the three met up and their combined goals to raise awareness, increase support and improve diagnosis and treatment pathways led to the creation of Myelopathy.org. Registered as a charity in June 2018 Myelopathy.org’s charitable objectives are to advance health and education in all aspects of DCM.
Co-founder of Myelopathy.org, Davies, said: “Patients with DCM typically arrive in our clinics with very little information. In a matter of minutes, we must explain their diagnosis and often dramatically re-adjust their expectations on recovery, we must decide whether surgery is needed, and if so which type.
“We created Myelopathy.org to offer an independent resource that patients could access at home, to help them come to terms with a diagnosis and make the right decisions for them. When we started, a search of Google only returned results on Canine Myelopathy. Now some patients come having accessed Myelopathy.org or spoken to people with DCM through its peer-to-peer support programme.
“Further, Myelopathy.org has evolved into a rallying point for all interested stakeholders. The increased access to people living with DCM has identified new research directions, new priority outcomes such as pain and the importance of first-person language. It is also providing a common point for different professionals. Traditionally DCM has been wrapped within spinal surgery organisations, but Myelopathy.org is welcoming other specialities from physiotherapy to rehabilitation and neurology, all critical to clinical care.
“Access to timely treatment could transform outcomes for DCM. Myelopathy.org has become a global and collective community to address this challenge.”
Fellow co-founder, Kotter, added: “We created Myelopathy.org to help people come to terms with this life changing diagnosis, but it has evolved; fostering global innovation and research through initiatives such as RECODE-DCM, and a peer-to-peer support programme for people living with DCM.”
Registered and managed from the United Kingdom, Myelopathy.org has an increasingly global reach. Its peer-to-peer support programme, moderated by volunteers, has more than 3,000 members, principally based in Canada, USA and the UK and its research initiatives, such as RECODE-DCM with AO Spine, have reached professionals from over 60 different countries. Myelopathy.org shares the latest developments in evidence, through its PodCast Myelopathy Matters, its blog and a newsletter.
Rory Murphy, a spine surgeon at Barrow Neurological Institute (Phoenix, USA) and an ambassador of Myelopathy.org, commented: “Myelopathy.org helps people with myelopathy to get a far better understanding of their challenge and puts them in control of their condition.”
Michael Fehlings professor of neurosurgery at the University of Toronto (Toronto, Canada), and chair of the scientific advisory board of Myelopathy.org, added: “DCM is the commonest cause of spinal cord impairment in the world and yet is remarkably under-recognised and under-studied.
“Myelopathy.org has an important role to play in advancing increased recognition of DCM and to enhance research and hence improved outcomes for individuals with this condition. I am honoured to be part of Myelopathy.org and am enthusiastic about the impact that this organisation can achieve.”
