Patient H69 An NMO Diary

RDR Staff

On October 16, 2012, Vanessa Potter’s world changed dramatically – or at least her perception of the world had changed.
That day, Potter woke up to find that she could no longer see color; everything was black and white. She was sent to St. George’s Hospital in Tooting, London only to experience her sight further deteriorating in a way that she described as the dimmer switch slowly making everything darker. Nobody there had an explanation.
Eventually, Potter would be diagnosed with neuromyelitis optica (NMO), a rare disease of the central nervous system that largely affects the optic nerves and parts of the spinal cord.
Many NMO patients develop optic neuritis, which causes vision loss, and transverse myelitis, which causes weakness, numbness, and sometimes paralysis of the limbs. Sensory disturbances and loss of bladder and bowel control are also common symptoms. 
In most patients, these symptoms occur as sudden attacks with alternating periods of remission. With repeated attacks, symptoms may persist, leading to permanent disability. As is the case with many other autoimmune diseases, it is more common in women than in men.
Potter is publishing a book called Patient H69, which describes in detail her experience and to get a feel for her insight into the disease with a touch of her humor.
Readers are encouraged to read her blog, watch her TED Talk (see below), and buy her book (available in the United States July 27, 2017).
Throughout her experience, her sense of humor remained intact and is obvious in the way she describes steps in her journey. For example, one test on her first day of occupational therapy was to make a cup of tea; Vanessa wrote, “The Occupational therapist holding my arm tells me it is necessary that I show them that I can make a cup of tea. At hearing this I feel hysterical giggles start to bubble up, how incredibly British this all is. It is so typical of this country to make newly-blinded patients make a cup of tea. Do Italian patients get to make a cappuccino?”
Jokes aside, Potter would later admit that making that cup of tea proved to a physically and emotionally draining task.
Thanks to an exceptional team of doctors, Potter is mostly recovered from her condition, but understands there is a need to better understand it. She noted that desire to be part of the research began when she started to get her sight back. But instead of just starting to see, the visual images she saw were unique to this disease. 
Potter wrote “When the color blue started to ‘spit and fizz’ like a lit sparkler I knew I had to find out the science. For months I only saw a wispy monochromatic world, with no faces, shapes or detail, yet when color started to creep back into my life it fed my curiosity. The desire to understand what had happened to me drove me to research vision science, and autoimmunity.”
In 2014, she began to work with neuroscientists at Cambridge University to better understand NMO and the science of sight.
Her TEDx talk at Ghent, Belgium is below:

To learn more about NMO, visit Guthy-Jackson Charitable Foundation.

For more patient stories from the rare disease community, follow Rare Disease Report on Facebook and Twitter.
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