May 3, 2018, 12:04 PM

I had a good life. I was educated, I had a job, I had a house, and I had a family. My health had been very bizarre and it was getting weirder. I was living in South Africa and they had no idea what was happening to me. My wife sent me back to New Zealand to try and get answers.

I had Wolfram Syndrome (WS) otherwise known as DIDMOAD (diabetes insipidus, diabetes mellitus, optic atrophy, and deafness). It is a genetically rare disease that only effects two in a million people. It is hard to diagnose as we have different symptoms. There are about 20 symptoms possible but we each only have only about 15 of them and those 15 can vary in intensity.

My personal symptoms are:

Diabetes Insipidus which means my bladder doesn't empty properly and I drink about four litres of water per day. Diabetes Mellitus (type 1). Optic Atrophy where I have hazy vision. No peripheral vision. I can't see colours, and my contrast is extreme. High frequency deafness. No smell. Limited taste. Heat intolerance. A symptom I like to call brain scatter where I can only concentrate on one thing at a time. Bad balance. Fatigue (I sleep 12 hours a day). Respiratory problems (cough). Depression, mood swings, quick to anger. Reduced testosterone. I have also heard of WS people having cold intolerance, muscle spasms, seizures, behaviour problems, ulcers, internal bleeding and incontinence.

My worst symptoms are my bladder, balance and my cough. The bladder almost killed me as it was strangling my kidneys. The kidneys were only functioning at 7% when I returned to NZ.

I am very colour-blind but for some reason bright reds go fluorescent for me. Strangely, I am the only WS person that this happens to.

WS is considered a terminal illness because 60% of us die before the age of 30. I was lucky and I managed to get married before most of my symptoms had started to occur. I grew up a normal kid so it is very frustrating for me now because I can compare things and contemplate all I’m missing out on, like the colours in a sunset.

It is too hard for me to work full time anymore. WINZ supports me with a good benefit. I fill in my days by concentrating on my hobby of painting. I use greys as mixing colours is a nightmare for my vision. Most of my paintings get sent overseas to other WS people that I have met on social media. They are my inspiration to keep living.

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