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Myelopathy.org, an international DCM charity, has worked closely with people with DCM for the first time, to gain a better understanding of their perspective and the disease. Whilst this may vary significantly from individual to individual, collectively this information has highlighted many important points for the first time.

Firstly, a diagnostic delay is extremely common in DCM and is associated with greater disability and dependence [1]. The Myelopathy.org survey of 778 individuals found that 55.4% had waited longer than a year for a diagnosis, with more than one fifth waiting for over five years. Delay was more common in those of black or African American ethnicity, and was associated with greater disability and dependence. 

Secondly, the impact of DCM is not restricted to the individual living with the disease. A Myelopathy.org survey of 87 carers found that the demands placed upon them through caregiving were high, and their subsequent quality of life low [2]. 

Thirdly, despite being reported as an outcome in only 27% of DCM research [3], pain is a key recovery priority of people with DCM and a key aspect of their long-term disability [1]. A Myelopathy.org survey of 481 individuals asked people with DCM to prioritise the effects of the disease in order of priority for recovery. Whilst walking and hand function were priorities, the number one recovery priority was pain. This has led to a redesign of the Phase III Clinical Trial RECEDE-Myelopathy, and re-consideration of the CSM Protect trial findings [4].

Finally, following consultation with the Myelopathy.org community, people with DCM have determined they wish to be referred to as such, rather than as “patients” or “sufferers” [5].