Life on hold: the experience of living with Neuromyelitis Optica

A research paper was recently published from the Northern UK NMO Service by Drs. Kerry Mutch, Abigail Methley, Phil Moore and Anu Jacob to develop an improved understanding of the experiences of people living with NMO.  15 patients from the Northern UK NMO Service were interviewed and five major themes were identified – diagnosis and treatment, symptoms, adjustment, identity and support. The authors reported that NMO is a difficult condition to live with due to the unpredictability of relapses and accrued disability of visual or spinal symptoms occurring with each relapse. Poor vision, reduced mobility, bladder dysfunction and pain affected participants’ independence and experience of living with NMO. Participants reported that during relapse and recovery they would ‘‘put their life on hold’’. They identified the importance of periods of stability to enable them to adjust to their condition and therefore aim for ‘‘normality’’ of life that they believed was comparable to their peers.

The study also outlined several implications for rehabilitation.

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