Diana earned her PhD and PharmD with distinction in the field of Medicinal and Pharmaceutical Chemistry at the Universidade do Porto. She is an accomplished oncology scientist with 10+ years of experience in developing and managing R&D projects and research staff directed to the development of small proteins fit for medical use.
Neuromyelitis optica spectrum disorder (NMOSD) is an uncommon autoimmune disease with inflammatory features that affects the central nervous system (CNS),1 manifesting with optic neuritis, myelitis, and brain lesions.2 Patients with this life-threatening disease experience relapses, also known as attacks, at intervals of weeks, months, or years, which are separated by periods of remission.1
Recognizing and Recovering From Relapses
Symptoms of NMOSD may develop quickly and vary from patient to patient in severity, duration, and degree of associated disability. Optic neuritis affects eye function and causes pain inside the eye; transverse myelitis can result in numbness or weakness of the limbs. Neck stiffness, headaches, loss of bowel and bladder control, and back pain may also occur.1,3
The duration of relapses and time to remission are unpredictable and may vary among patients.3 Relapses typically mimic the first episode, and residual pain may follow. Patients may not fully recover from attacks and be left with residual impairment and ultimately cumulative disability.4 Early diagnosis and treatment are therefore important to achieve a good outcome after relapse. The patient must be able to recognize symptoms in order to seek medical help. The medical team will then focus on determining whether the symptoms are the aftereffects of a previous relapse or a new attack.
Patients should be encouraged to maintain a healthful lifestyle to promote a balanced immune system and reduce inflammation. Adequate exercise guided by occupational and physical therapists will improve muscle tone and mobility and may be helpful during recovery from relapses.
Managing Fatigue and Loss of Vision
In addition to exercise to maintain adequate fitness, rest is an important part of the overall care plan for patients with NMOSD. Fatigue is common in NMOSD and can be associated with poor quality of sleep, pain, and depression.2 Controlling the expenditure of energy during the performance of daily tasks may be useful for reducing fatigue. Prioritizing the most important tasks and doing them early in the day is a useful way to maintain energy levels. A balance between resting and carrying out daily activities can help to reduce fatigue.
The visual impairment of NMOSD can significantly affect the quality of life. Access to technology such as tactile equipment and voice-activated software can help patients maintain their daily routines.5
Managing Pain and Diet in NMOSD
Patients with NMOSD may experience chronic pain for a lifetime. Pain can originate in specific areas of the body; however, it is frequently generalized. Living with chronic pain can exacerbate the emotional distress of patients. A medical team that includes physiotherapists, pain physicians, nurses, and psychologists can help patients manage the effects of pain on theiir daily activities.
Maintaining a balanced diet is important for general health; however, no dietary approach specifically for patients with NMOSD has been determined to be beneficial. Recent studies have pointed to possible associations between a high intake of various types of sugar or pro-inflammatory foods and an increased risk for NMOSD6,7; however, additional studies are needed to confirm these data. Insufficient levels of vitamin D may also be considered in disease risk (reverse causality), but the available data are inconclusive.8
NMOSD Support Groups
Many different support groups and advocacy organizations can provide information to patients with NMOSD, families, and caregivers. The Guthy-Jackson Charitable Foundation (GJCF) is a nonprofit organization focused on funding basic and clinical research and on promoting public education and awareness of NMOSD.9 Patients can find educational information, including a complete guide to the disease, on the GJCF website.3 The GJCF website includes information on the latest scientific advances, videos, and stories about patients; patients may also engage with one another through social platforms such as Facebook. The GJCF also provides an NMOSD resource app that allows users to access many of the features available on the website.
Other organizations providing support and/or information include the National Eye Institute (NEI),10 the National Institute of Neurological Disorders and Stroke (NINDS),11 the American Foundation for the Blind (AFB),12 and the National Organization for Rare Disorders (NORD).1
1. Neuromyelitis optica spectrum disorder. National Organization for Rare Disorders (NORD). Accessed October 14, 2021
2. Seok JM, Choi M, Cho EB, et al. Fatigue in patients with neuromyelitis optica spectrum disorder and its impact on quality of life. PLoS One. 2017;12(5):e0177230. doi:10.1371/journal.pone.0177230
3. NMO patient guide complete. 3rd ed. Guthy-Jackson Charitable Foundation. Accessed October 14, 2021
4. Frampton JE. Eculizumab: a review in neuromyelitis optica spectrum disorder. Drugs. 2020;80(7):719-727. doi:10.1007/s40265-020-01297-w.
5. Technology resources for people with vision loss. American Foundation for the Blind. Accessed October 14, 2021.
6. Paz ÉS, Maciel PMCT, D’Almeida JAC, et al. Excess weight, central adiposity and pro-inflammatory diet consumption in patients with neuromyelitis optica spectrum disorder. Mult Scler Relat Disord. 2021;54:103110. doi: 10.1016/j.msard.2021.103110
7. Rezaeimanesh N, Razeghi Jahromi S, Ghorbani Z, et al. The association between dietary sugar intake and neuromyelitis optica spectrum disorder: a case-control study. Mult Scler Relat Disord. 2019;31:112-117. doi: 10.1016/j.msard.2019.03.028
8. Koduah P, Paul F, Dörr JM. Vitamin D in the prevention, prediction and treatment of neurodegenerative and neuroinflammatory diseases. EPMA J. 2017;8(4):313-325. doi: 10.1007/s13167-017-0120-8
9. About us. Guthy-Jackson Charitable Foundation. Accessed October 14, 2021.
10. About NEI. National Eye Institute. Accessed October 14, 2021.
11. About NINDS. National Institute of Neurological Disorders and Stroke. Accessed October 14, 2021.
12. About Us. American Foundation for the Blind. Accessed October 14, 2021.
Reviewed by Debjyoti Talukdar, MD, on 10/8/2021.