The Journey from Headaches to Disability: A Life Changed by Rare Disease

In 2012 at the age of 15 I was finally diagnosed with Idiopathic Intracranial Hypertension after years of doctors dismissing my parents concern of headaches and at some point, vision concerns from the age of 8-9 years old. It took far too long to have a diagnosis but all it took was one doctor to listen.

They did the relevant testing and found that I had too much cerebrospinal fluid. As the years went on I progressively got sicker unfortunately. I was in and out of doctors offices missing out on most of my teenage life. Spinal tap (lumbar puncture) after spinal tap. Medication after medication, MRI’s, hospitalisations, blood work and new doctors in hope of some cure, some relief. In 2015 after a gruelling schooling career, I matriculated (it was harder for me because I had missed out on so much and forced to do mathematics - and anything involving it, despite my neurologist telling me not to because what I had actually affected my cognitive skills. But I refused to give up).

In the mix of all this it was draining us financially because medical aids don’t cover rare diseases unfortunately. Eventually referred to a neurosurgeon I was given more tests and medication until they realised that irreversible damage to my vision was too much. On 12 July 2018 a few days after my aunt had passed, I was operated on for a lumbar peritoneal shunt. I stayed in hospital for longer than expected because I was not healing the way we’d hoped. Eventually I left but I ended up with nerve damage. As of 2026 I am currently battling to have the damage fixed as in August 2025 it got worse and left my quality of life lacking💔

In the midst of all this another family death and so I was not coping well. I continued treatment and trying to heal but unfortunately nerve damage did not. In 2021 I had optic nerve surgery a last effort to try and save my vision, but it didn’t. In 2023 I was declared legally disabled because of my need to use a mobility aid thanks to the nerve damage. In 2024 I started the journey of training my service dog because I cannot be left alone (after incidents of flare ups). Unfortunately, also in 2024 I started showing symptoms of another disease POTS and so here we are and it was diagnosed in May 2025. So, what is idiopathic intracranial hypertension? It’s a build-up or excess amount of cerebrospinal fluid.

Basically, you have too much of it. Back in the day it was referred to as Pseudotumor Cerebri (false brain tumour) because it had all the symptoms of a brain tumour minus an actual brain tumour. From headaches, dizziness, nausea, vomiting to walking difficulties and memory loss. How’d it change my life? I lost most of my friends shortly after diagnosis because most of them couldn’t understand and I don’t blame anyone. I don’t expect kids to understand this. It put a strain on my family life too because the older generation blamed it on many things that I will not discuss out of respect for their religion. But it was a lot. Romantically not really interested because I don’t feel comfortable sharing this with anyone.Academically it changed my life. I had plans to be a nurse and had to leave because my body couldn’t handle it. I got really sick.

I studied IT after but again the cognitive side of this disease stopped me. And I’m studying again. I graduated but I’m still studying. It takes longer for us because instead of being able to focus on work I need to focus on my health 80% of the time. Nobody prepares you to be this sick this young, and people never understand because there isn’t enough awareness.

I hope that by sharing my story I can do just that. Spread awareness of the fact that invisible disease exists and it can be just as life altering, you can get sick at a young age (who expected an 8/9-year-old to get sick?), you can need an aid or assistance because of it. But it doesn’t change who you are. Also, we can look okay in hospitals something I’ve made sure of because it makes me feel a bit better.

If I can I’d like to say thank you to the following people (Sudley, Teonise, Lee-Jay, Terry, Kino, aunty Yumie, Youshaa, Taryn uncle Nathir and K9 life skills family for all the support throughout the years.) I wouldn’t be here if I didn’t have such a great support system.

To anyone in this boat be in searching for a diagnosis, newly diagnosed or as a caretaker. It gets better slowly. There’s light at the end of this tunnel. And honestly? If it wasn’t for RDSA when I was younger I probably would have a different story. As of recently I rejoined the support groups the offer too and it’s helped so much. So to everyone at RDSA (including the person who sent me the rare bear years ago, thank you so much for the help and support. You guys are heaven sent).