Living with an illness that’s barely understood | Letters

Mary Dejevsky is right to point out that public and professional attention is given to cancer at the expense of other serious medical conditions (Let's give all illnesses the cancer treatment, 4 May). I have inclusion body myositis, a rare condition in which the muscles waste away. Like Parkinson's disease it affects older people, though there are other forms of myositis that are found in younger people. There is currently no treatment, and cuts to social services and the health service mean access to support such as physiotherapy, occupational therapy and speech therapy is spread very thin. Awareness of myositis among professionals is also very low, so patients have to become noisy advocates working through charities, in this case the Muscular Dystrophy Association, or individually. The cost to the health service through emergency hospital admissions, bed-blocking and severe disability is high, and access to specialist services is minimal. I get my main support from a closed Facebook group where fellow patients provide valuable advice on a regular basis. I quite agree with Mary Dejevsky that raising the profile of neurological conditions should be a much higher priority, not least because I have been told that the incidence of diagnosed cases is rising, perhaps because some people are being "cured" of higher-profile conditions such as cancer. It can be tiring having to tell every professional you meet the name of your illness and then explain what it is.
Elizabeth Hoadley-Maidment
Penzance, Cornwall

" Mary Dejevsky expresses concern that there is too much focus on cancer treatment and care, perhaps at the expense of other conditions.