My Neuromyelitis Optica Story

I was born with Bilateral Choanal Atresia, a malformation of the nasal passage. On my first day in the world I had my first surgery. Since then I’ve had multiple surgeries and it has been corrected.

We thought that was it but one morning I woke up completely blind. I was 4. I was diagnosed with Neuromyelitis Optica 10 months later after a further two relapses – one of which left me paralysed for a few weeks. Diagnosis was a long scary mysterious process. I was tested for the NMO antibody, which tested positive, I was put on immunosuppressants to prevent my immune system from attacking my optic nerve, spinal cord and brain. However we weren’t sure what the prognosis would be. Luckily I’ve only had 2 relapses since. My childhood was pretty good despite being sick. I was able to thrive inspire of my disabilities.
For the last 3 years I’ve been on steroids, due to treatment complications which had made me severely anemic. It has left me with adrenal insufficiency and I’m stuck on them. Steroids have wrecked my body! Now I’m in a wheelchair due to chronic pain & fatigue and I’m bedbound…

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My illness causes fatigue, blindness, paralysis, pain, anxiety, depression, sensory overload, nausea and incontinence! I use smart crutches, a wheelchair, catheter, medication, homeschooling, full time care and a cane to keep me going.

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In 2016 I won the BBC Teen Hero Award for my work raising awareness of chronic illness! It helped me realise I can succeed. I’ve created aa organisation called YoungPeople ChronicIllnesses, a page that shares the journeys of people, raises awareness and tells the stories of others. The organisation has saved my life, by giving me purpose! The friends I have made are from all over the world and I love them so much. They’re like me, young and have chronic illnesses but are so much more than that!

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I am grateful for the support I have. Thankful I have a good medical team around me.
It’s awfully hard to live like this but having the support of others going through similar things helps me so much.
Sadly I am not alone in living with such diseases. 30 million people have rare diseases. There’s 7,000 diseases they could have. And half of those people are children. Thankfully as research progresses we are being given the information on our baffling bodies that leads to treatments. Although most diseases have no treatment there’s hope with the future of science!

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