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When Albie was born, his mom, Charlotte, said that he was “absolutely fine. Everything was fine for about two weeks.”
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As a father of two young children, Donnan recalls being afraid of what the future would hold prior to his diagnosis.
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Married with a newborn son, Ruthie was scared to learn that PNH was a life-threatening illness that at the time had no approved treatment.
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At only three months old, Evie's parents were told that her case was severe and that there were no approved or effective treatment options.
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Although physical challenges required Liz, her husband, and their children to adjust their lives in many ways, she doesn't let her disease hold her back.
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Tristan's parents experienced a whirlwind of emotions and fear after learning their 5-year-old son had such a rare and serious disease.

CONDITIONS WE TREAT

Fighting NMOSD Every Day

What is neuromyelitis optica spectrum disorder (NMOSD)?

NMOSD is a rare and devastating disorder that affects the central nervous system (CNS), in which complement activation due to anti-AQP4 antibodies plays a significant role in the disease process.^1-5 Patients with NMOSD can experience unpredictable attacks, also referred to as relapses, which can lead to long-term disability.^6-8

KIM
LIVING WITH NMOSD

NMOSD primarily affects the optic nerve and the spinal cord. The most common symptoms of NMOSD are optic neuritis and transverse myelitis.

Approximately three-quarters (73%) of all patients with NMOSD have anti-AQP4 autoantibodies.⁹ In patients with anti-AQP4 antibody-positive NMOSD, the body’s own immune system can turn against itself to produce autoantibodies against anti-AQP4, a protein in certain cells in the eyes, brain, and spinal cord that is critical for the survival of nerve cells. The binding of anti-AQP4 autoantibodies to specific cells in the CNS activates the complement cascade, another part of the immune system. Complement activation by anti-AQP4 autoantibodies can cause destruction of vital cells in the CNS, leading to demyelination and to the death of neurons, predominantly in the spinal cord and optic nerve.^1,10,11

Symptom locations of NMOSD on the human body

Some symptoms of NMOSD^3-7

Problems with vision including eye pain and blindness
Severe weakness and impaired mobility
Paralysis
Sensory and motor disability
Respiratory dysfunction/failure
Loss of bowel, bladder function

References:

Wingerchuk DM, Lennon VA, Lucchinetti CF, Pittock SJ, Weinshenker BG. The spectrum of neuromyelitis optica. Lancet Neurol. 2007;6(9):805-815.
Wingerchuk DM. Diagnosis and treatment of neuromyelitis optica. Neurologist. 2007;13(1):2-11.
Wingerchuk DM, Weinshenker BG. Neuromyelitis optica. Curr Treat Options Neurol. 2008;10(1):55-66.
Tüzün E, Kürtüncü M, Türkoğlu R, et al. Enhanced complement consumption in neuromyelitis optica and Behcet’s disease patients. J Neuroimmunol. 2011;233(1-2):211-215.
Kuroda H, Fujihara K, Takano R, et al. Increase of complement fragment C5a in cerebrospinal fluid during exacerbation of neuromyelitis optica. J Neuroimmunol. 2013;254(1-2):178-182.
Kitley J, Leite MI, Nakashima I, et al. Prognostic factors and disease course in aquaporin-4 antibody-positive patients with neuromyelitis optica spectrum disorder from the United Kingdom and Japan. Brain. 2012;135(6):1834-1849.
Jarius S, Ruprecht K, Wildemann B, et al. Contrasting disease patterns in seropositive and seronegative neuromyelitis optica: a multicentre study of 175 patients. J Neuroinflamm. 2012;9:14.
Wingerchuk DM, Hogancamp WF, O’Brien PC, Weinshenker BG. The clinical course of neuromyelitis optica (Devic’s syndrome). Neurology. 1999;53(5):1107-1114.
Hamid SHM, Whittam D, Mutch K, Linaker S, Solomon T, Das K, et al. What proportion of AQP4-IgG-negative NMO spectrum disorder patients are MOG-IgG positive? A cross sectional study of 132 patients. J Neurol. 2017;264(10):2088-2094.
Papadopoulos MC, Bennett JL, Verkman AS. Treatment of neuromyelitis optica: state-of-the-art and emerging therapies. Nat Rev Neurol. 2014;10(9):493.
Takata K, Matsuzaki T, Tajika Y. Aquaporins: water channel proteins of the cell membrane. Prog Histochem Cytochem. 2004;39(1):1-83.

I’m hoping my story will inspire others to continue to fight for themselves.”

KIM LIVING WITH NMOSD

HEAR HER STORY