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Research Article

Life on hold: the experience of living with neuromyelitis optica

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Pages 1100-1107 | Received 19 Mar 2013, Accepted 06 Aug 2013, Published online: 12 Sep 2013

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Jose E Meca-Lallana, Daniel Prefasi, Francisco Pérez-Miralles, Lucía Forero, María Sepúlveda, Carmen Calles, María L Martínez-Ginés, Inés González-Suárez, Sabas Boyero, Lucía Romero-Pinel, Ángel P Sempere, Virginia Meca-Lallana, Luis Querol, Lucienne Costa-Frossard, Hugo de Castro-Trapiello, Neus Canal & Jorge Maurino. (2021) Perception of Stigma in Patients with Neuromyelitis Optica Spectrum Disorder. Patient Preference and Adherence 15, pages 713-719.
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Kerry Mutch, Abigail Methley, Shahd Hamid, Perry Moore & Anu Jacob. (2017) If they are OK, we are OK: the experience of partners living with neuromyelitis optica. Disability and Rehabilitation 39:13, pages 1279-1286.
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Marco Capobianco, Marius Ringelstein, Carly Welsh, Patricia Lobo, Gabrielle deFiebre, Marco Lana-Peixoto, Jiawei Wang, Ju-Hong Min & Dean M. Wingerchuk. (2023) Characterization of Disease Severity and Stability in NMOSD: A Global Clinical Record Review with Patient Interviews. Neurology and Therapy 12:2, pages 635-650.
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Haifen Liao, Ping Fan, Hengfang Ruan, Ni Gong, Wei Qiu, Yiheng Zhang, Xinxin Li, Huijuan Li & Meifen Zhang. (2022) Experiences of social isolation among patients with neuromyelitis optica spectrum disorder in China: A qualitative study. Multiple Sclerosis and Related Disorders 60, pages 103711.
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Robert Kadish, Stacey L. Clardy, Minying Royston, Imran Tanvir, Tavan Parker, Joseph Biskupiak & Adrian Kielhorn. (2022) Clinical burden of relapses in aquaporin-4 immunoglobulin G-positive neuromyelitis optica spectrum disorder: A single center cohort analysis. Journal of Neuroimmunology 362, pages 577761.
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Chen Du, Pei Zeng, Jin-Rui Han, Tian-Xiang Zhang, Dongmei Jia, Fu-Dong Shi & Chao Zhang. (2021) Early Initiation of Tocilizumab Treatment Against Moderate-to-Severe Myelitis in Neuromyelitis Optica Spectrum Disorder. Frontiers in Immunology 12.
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Zhen Jia, XiuYu Dong, Shuang Song, Ruoyi Guo, Lu Zhang, Jia Liu & Bin Li. (2021) Physical, Emotional, Medical, and Socioeconomic Status of Patients With NMOSD: A Cross-Sectional Survey of 123 Cases From a Single Center in North China. Frontiers in Neurology 12.
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Kazuo Fujihara, Satoshi Hattori, Ingo Kleiter, Michael Levy, Yuya Matsuda, Asako Mitsutake, Masayuki Haramura, Jacqueline Palace & Takashi Yamamura. (2021) Patient-reported burden of symptoms in neuromyelitis optica: A secondary analysis on pain and quality of life. Journal of the Neurological Sciences 428, pages 117546.
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Maryam Shabany, Saeideh Ayoubi, Abdorreza Naser Moghadasi, Masood Najafi & Sharareh Eskandarieh. (2021) Explaining the individual challenges of women affected by neuromyelitis optica and multiple sclerosis: A comparative content analysis Study. Clinical Neurology and Neurosurgery 207, pages 106789.
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José E. Meca-Lallana, Jorge Maurino, Francisco Pérez-Miralles, Lucía Forero, María Sepúlveda, Carmen Calles, María L. Martínez-Ginés, Inés González-Suárez, Sabas Boyero, Lucía Romero-Pinel, Ángel P. Sempere, Virginia Meca-Lallana, Luis Querol, Lucienne Costa-Frossard, Daniel Prefasi, Rocío Gómez-Ballesteros & Javier Ballesteros. (2021) Quantifying the patient´s perspective in neuromyelitis optica spectrum disorder: Psychometric properties of the SymptoMScreen questionnaire. PLOS ONE 16:7, pages e0255317.
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Edgar Carnero Contentti, Juan Ignacio Rojas, Edgardo Cristiano, Vanessa Daccach Marques, José Flores-Rivera, Marco Lana-Peixoto, Carlos Navas, Regina Papais-Alvarenga, Douglas K. Sato, Ibis Soto de Castillo & Jorge Correale. (2020) Latin American consensus recommendations for management and treatment of neuromyelitis optica spectrum disorders in clinical practice. Multiple Sclerosis and Related Disorders 45, pages 102428.
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Susanna Asseyer, Graham Cooper & Friedemann Paul. (2020) Pain in NMOSD and MOGAD: A Systematic Literature Review of Pathophysiology, Symptoms, and Current Treatment Strategies. Frontiers in Neurology 11.
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Maureen A. Mealy, Sharon L. Kozachik & Michael Levy. (2019) Review of Treatment for Central Spinal Neuropathic Pain and Its Effect on Quality of Life: Implications for Neuromyelitis Optica Spectrum Disorder. Pain Management Nursing 20:6, pages 580-591.
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Annalijn I. Conklin & Jenny Hong. (2019) Obesity prevention in corticosteroid‐treated patients: Use and effectiveness of strategies for weight management. Clinical Obesity 9:4.
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Maureen A. Mealy, Audra Boscoe, Jaime Caro & Michael Levy. (2019) Assessment of Patients with Neuromyelitis Optica Spectrum Disorder Using the EQ-5D. International Journal of MS Care 21:3, pages 129-134.
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Gebbie Ann Rodriguez Nielsen, Helle Hvilsted Nielsen, Zsolt Laszlo Illés & Parisa Gazerani. (2018) Prevalence and Pattern of Craniofacial Pain and Headache in Danish Patients with Neuromyelitis Optica Spectrum Disorder. European Neurological Review 13:1, pages 44.
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Daniel Whittam, Martin Wilson, Shahd Hamid, Geoff Keir, Maneesh Bhojak & Anu Jacob. (2017) What’s new in neuromyelitis optica? A short review for the clinical neurologist. Journal of Neurology 264:11, pages 2330-2344.
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Stephanie Eaneff, Victor Wang, Morgan Hanger, Michael Levy, Maureen A. Mealy, Alexander U. Brandt, Daniel Eek, John N. Ratchford, Fredrik Nyberg, Jonathan Goodall & Paul Wicks. (2017) Patient perspectives on neuromyelitis optica spectrum disorders: Data from the PatientsLikeMe online community. Multiple Sclerosis and Related Disorders 17, pages 116-122.
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Abigail M. Methley, Kerry Mutch, Perry Moore & Anu Jacob. (2017) Development of a patient-centred conceptual framework of health-related quality of life in neuromyelitis optica: a qualitative study. Health Expectations 20:1, pages 47-58.
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Perry Moore, Abigail Methley, Catherine Pollard, Kerry Mutch, Shahd Hamid, Liene Elsone & Anu Jacob. (2016) Cognitive and psychiatric comorbidities in neuromyelitis optica. Journal of the Neurological Sciences 360, pages 4-9.
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Maureen A. Mealy, Kyong Shin, Gareth John & Michael Levy. (2015) Bevacizumab is safe in acute relapses of neuromyelitis optica. Clinical and Experimental Neuroimmunology 6:4, pages 413-418.
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Abigail M. Methley, Kerry Mutch, Anu Jacob & Perry Moore. (2014) Using quality of life research to improve clinical practice for pre-qualified members. Clinical Psychology Forum 1:264, pages 6-8.
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