I have never been very normal. I’ve always had some issues going on. 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 years old when I was diagnosed with Neuromyelitis Optica. It took 10 months after a further two relapses – one of which left me paralysed for a few weeks. Diagnosis was a long scary mysterious process because they were scared I would die. 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 inspite of my disabilities.
For the last 5 years I’ve been on steroids, due to treatment complications which made me severely anemic. It left me with adrenal insufficiency, where your adrenal glands stop producing the hormones and you need medication. Steroids have wrecked my body! ive ended up in a wheelchair due to chronic pain & fatigue and I became bedbound… I’m finally off steroids now, thank goodness and I’ve made a lot of progress.
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. Even on my good days I need a carer and my aids. It’s stressful being so sick but I’m grateful to be doing better!
I’ve been working on reducing my medicines and am able to actually leave the house more than once a week now. And! I finished my GCSE’s! I had to do homeschooling and only did one GCSE because I’ve not been well enough but I am proud of myself. I try not to pressure myself when it comes to education.
I write and speak a lot about being a disabled person and the challenges it causes me physically and mentally. In 2016 I won the BBC Teen Hero Award for my work raising awareness of chronic illness! It helped me realise I can succeed. My work 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!
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!
Here’s hoping me doing better will give me the chance to finally make my life into something. I’m excited to move on from all this.