Article One in a Three Part Series on NMO/Devic’s Syndrome
By Tanya Hudson
My best friend in the world is probably the strongest person I know. She is a vibrant mother of four who has always met life head-on, and has been a rock to her family, friends, and countless others. So when she began having trouble telling colors apart and seeing in her periphery on top of some other odd symptoms in November of 2011, we were worried. One day in early December she called to tell me that her vision had almost faded entirely throughout the day and she was going to the hospital. My best friend, the one who so often held me together, was almost entirely blind.
She spent two weeks in the hospital with no answers and doctors just shrugging. It wasn’t until January when there was finally a firm diagnosis – Neuromyelitis Optica, also known as Devic’s Syndrome.
Sadly, having this answer was of little help; there is simply not enough known about this terrifying autoimmune disorder. Throughout the seven months she was classified as legally blind there were more questions than answers. During this journey, here is what we have learned about this elusive disease.
According to the National Institute for Neurological Disorders and Stroke (NINDS), NMO is an uncommon disease of the central nervous system which primarily affects the optic nerve and spinal chord. Patients with Devic’s Syndrome commonly present with varying degrees of eye pain and/or blindness and weakness, numbness, or paralysis in the arms and legs brought on by transverse myelitis (inflammation of the spinal chord). Other symptoms can include pain or tingling in the back and spine, nausea and vomiting, and loss of bowel and bladder function. The variety and varying degrees of symptoms in NMO patients is a large contributing factor to the lack of information we have. Attacks, or ‘flares’, can be days, weeks, months, or even years apart.
Diagnosing Neuromyelitis Optica is also a bit tricky. There is blood testing for the NMO IgG antibody, looking for inflammation and damage to the optic nerve, and MRI to detect spinal chord lesions. NMO is often misdiagnosed as MS, so there must also be testing to rule out the criteria for Multiple Sclerosis. No cure has been found yet , but treatments to control the disease include corticosteroids and in tougher situations, plasmapharesis (the removal of antibodies from the blood stream). Doctors also try keeping the inflammation down, treat ing other symptoms as they arise, and trying to prevent flares through medications such as IV retuximab infusions (a treatment also used for leukemia and cancer) among others.
In reality, however, most medications are not approved for the treatment of NMO and require special approval through the patients’ insurance companies. My friend was fortunate in that the doctor working for her insurance company was familiar with her disease, but many patients are not so lucky and face horrible waits and battles for medications due to lack of awareness.
There are only about 4,000 cases of Neuromyelitis Optica in the United States and roughly half a million worldwide. Women are affected more often than men, and both children and adults can be diagnosed.
For the last couple of years I’ve watched my dear friend have ups and downs but ultimately stand strong against this giant. As with any other rare disorder, those who are affected by the disease itself or have a loved one who is are focused on raising awareness to find better treatments and hopefully a cure. Attention was recently drawn to NMO when Christine Ha (AKA The Blind Cook) won the third season of Master Chef. Christine is an NMO patient as well a chef and New York Times best selling author.
In article two of this series I will be focusing on the differences between NMO and MS and how they are often confused. The key, as with any other rare disease, is raising awareness and promoting research.