Life on hold: the experience of living with neuromyelitis optica.
نویسندگان
چکیده
PURPOSE Neuromyelitis optica (NMO) is a rare autoimmune condition characterised by acute relapses of optic neuritis and extensive transverse myelitis. The aim of this qualitative study was to develop an improved understanding of the experiences of people living with NMO. METHOD Fifteen participants completed a semi-structured interview and data were interpreted using a constant comparative method. Participants were recruited from the Northern UK NMO Service. RESULTS Five major themes were identified: diagnosis and treatment, symptoms, adjustment, identity and support. CONCLUSION Results suggest 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. Implications for Rehabilitation Disability due to NMO has a major impact on an individual's life, abilities and identity. Timely treatment of relapse is essential to reduce or prevent disability. Health care professionals need to coordinate care locally and nationally. Multi-disciplinary work is vital to promote adjustment, coping strategies and support for people living with NMO.
منابع مشابه
Neuromyelitis Optica in Children: A Rare Entity
Neuromyelitis optica (also known as Devic's disease or Devic's syndrome) is an uncommon disorder in pediatric age group, and is characterized by acute or subacute optic neuritis and transverse myelitis. Here we report an 11- year- old female child with relapsing Neuromyelitis optica (NMO) confirmed by positive NMO- IgG antibody and had clinical recovery with high dose methyl prednisolone t...
متن کاملAssessment the Possible Association Between Neuromyelitis Optica and Cytomegalovirus as a Provocative Factor
Background: Neuromyelitis Optica (NMO) is an autoimmune inflammation of the central nervous system in which autoantibodies are released against Aquaporin-4 (AQP-4), astrocytic water channels. The disease is characterized by transverse myelitis and optic neuritis. Viruses could be inflammatory agents in the brain. Due to such inflammatory reactions, autoantibodies would cross the blood brain bar...
متن کاملO 14: Differentiating Demyelinating Disorders of the Central Nervous System – a Focus on Multiple Sclerosis and Neuromyelitis-Optica Spectrum Disorders
Significant advances have been made in diagnosis and therapy of demyelinating disorders of the central nervous system. The most common entities of this disorders in adults – multiple sclerosis and neuromyelitis optica were initially thought to be different phenotypes of more or less the same disease. During the last ten years, this view was subsequently changed and the term neuromyelitis ...
متن کاملTumefactive Brain Lesions in Patients with Neuromyelitis Optica Spectrum Disorder
Background: Neuromyelitis Optica Spectrum Disorder (NMOSD) is an autoimmune neurological disorder that is characterized by optic neuritis and longitudinally-extended transverse myelitis lesions in spinal segments. Magnetic Resonance Imaging (MRI) findings are part of the diagnostic process in NMOSD patients, and abnormal lesion patterns may cause deviation from a correct diagnosis. Clinical P...
متن کاملencephalomyelitis, neuromyelitis optica, and multiple sclerosis
Purpose of review Advanced immunopathological techniques hold promise for more precise diagnosis of idiopathic demyelinating diseases of the central nervous system. We review recent progress in differentiating and understanding the disease mechanisms of acute disseminated encephalomyelitis, neuromyelitis optica, and classical multiple sclerosis. Recent findings Four distinct immunopathological ...
متن کاملذخیره در منابع من
با ذخیره ی این منبع در منابع من، دسترسی به آن را برای استفاده های بعدی آسان تر کنید
برای دانلود متن کامل این مقاله و بیش از 32 میلیون مقاله دیگر ابتدا ثبت نام کنید
ثبت ناماگر عضو سایت هستید لطفا وارد حساب کاربری خود شوید
ورودعنوان ژورنال:
- Disability and rehabilitation
دوره 36 13 شماره
صفحات -
تاریخ انتشار 2014