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My name is Nareeza Khan-O’Neill. In 2022 I was diagnosed with a rare & serious disease known as NeuroMyelitis Optica (NMO).
NeuroMyelitis Optica is an autoimmune inflammatory condition affecting the central nervous system. It is a chronic disease that causes the body's immune system to react abnormally by the unraveling (demyelination) of the protective outer layer of the nerve fibers. This demyelination affects the brain, the spinal cord and the optic nerves causing the symptoms of NMO. Left untreated, NMO can result in severe disabilities including blindness, paralysis & can be fatal.
NMO attacks in the way of flare ups, exacerbations or relapses. The flare ups are unpredictable and it's not fully understood what triggers them. No two exacerbations are alike & their effects can range from mild to severe. A relapse can happen at any moment & can take from several hours up to days to develop. Each attack includes the worsening of old symptoms, the introduction of new symptoms, or both.
Currently there is no cure for NMO, but there are medicines, treatments & ongoing studies that may help to ease symptoms, prevent future relapses & inhibit progression of the disease.
Through the past two years with this disease I’ve worked hard to remain positive & hopeful, to lead a healthy lifestyle & to learn as much as possible about combating NMO. Despite these efforts, this disease has had a profound impact on my ability to function independently & to perform day to day activities. My vision problems prevent me from driving a car. I have cognitive issues & have not been able to work since 2022. I have difficulty walking & I am in chronic pain & discomfort.
The symptoms that are effecting me now include:
- Eye pain in both eye balls & sockets
- Changes in vision, double vision, floaters or spots in my field of vision & partial loss of vision in my left eye, cloudy or blurry vision in my left eye
- Chronic headaches
- Changes in cognitive function, memory loss, problem solving, logistics, reasoning, ability to concentrate & think clearly, difficulty organizing thoughts, difficulty putting thoughts into words, difficulty reading & understanding written information, visual memory-difficulty remembering things I have seen like recognizing faces
- Chronic hiccups
- Chronic pain, weakness, stiffness, muscle spasms, coldness & burning in the nerves in my back, neck, legs & arms, change in reflexes, muscle strength & range of motion, difficulty with coordination, difficulty balancing & walking, difficulty standing up from a seated position, increased sensitivity to cold and heat
- Chronic fatigue & stamina issues
- Mood disorders
- Nausea, vomiting, loss of appetite
- Bladder, bowel and reproductive problems
An estimated 15,000 people in the USA are living with NMO, a tiny fraction of our population. Because of the rarity of this disease, it is extremely difficult to find doctors experienced in treating patients with NeuroMyelitis Optica in my area. It is also difficult to get insurance companies on board with paying for staggeringly expensive treatments. I’ve had dozens of appointments with doctors in multiple cities in the past two years. I’ve had extensive blood work, neurological & vision testing, MRI testing, lumbar puncture testing, multiple positive AQP4 blood tests, steroid infusions, long term/high dosage oral steroid treatment & Uplizna infusion treatments.
Through my own research & on the advise of my Neuro-Ophthalmologist, I plan to seek the care that I need at The Mayo Clinic in Rochester, Minnesota which specializes in NMO.
I am starting this fundraiser so that I can make upfront initial & ongoing payments to The Mayo Clinic, to buy health insurance with out of state coverage & to cover travel expenses to Minnesota.
With so many people in the world today needing help, it is difficult for me to ask for assistance. But it is urgent that I get ahead of this disease before I encounter severe & permanent disabilities.
Please consider donating to my GoFundMe campaign and sharing my story with your friends, family, and social networks. Every contribution will make a difference in my fight, any donation will be greatly appreciated. Thank you for reading my story.
Due to comprehension difficulties, this was written and composed for me with the help of my husband.