Yes, I am 55, and this is my first blog. The anxiety I’ve felt over the past week, wondering what I could possibly talk about, has been horrible.
Never assume life is comfortable or take it for granted. You just never know when the rug will be pulled out from under your feet.
September 9, 2022, was the day the rug was ripped out from under me. I received a phone call from my doctor telling me I had myasthenia gravis (MG), a rare autoimmune disease that even he had to Google the spelling of so I could write it down.
If you’ve never heard of MG, you’re not alone. It affects about one in every 8,000 people. Let’s put that into perspective. If McDonald Jones Stadium were filled with 33,000 people watching the footy, fewer than four people in the entire crowd would be living with MG.
MG is a rare autoimmune condition in which the signals between the nerves and muscles break down. It can appear as a drooping eyelid. Double vision. A voice that fades halfway through a sentence. Muscle weakness that arrives without warning.
And the worst part? It fluctuates.
A good morning can become an afternoon in bed for no obvious reason. No dramatic trigger. No neat explanation. Just… not today.
MG didn’t just change my health; it reorganised my entire life. I had to give up work. I needed care from my beautiful family for simple things I had always taken for granted, such as walking, feeding myself and going outside for some fresh air.
Then came the treatments: specific MG medication that helps me move, shitty steroids that make me want to eat copious amounts of carbohydrates and leave me heavier than I have ever been, and good old IVIG—an intravenous treatment I received every month until I became allergic to it.
Imagine having something in your bloodstream that you are allergic to while being unable to take medication for the itching because it could stop you breathing.
I also learned to measure my energy as though it were a limited currency.
Being a tech-savvy guy, I thought there surely had to be something available—a YouTube channel, an app, anything that could help me understand what this disease really was.
I downloaded an American-made app. It didn’t work properly and was a complete waste of time. It felt like a clinical app created by people who cared only about the data, not the person behind it.
That was the moment it clicked:
Stuff it. I’ll make one myself.
I had ideas, lived experience and, let’s be honest, plenty of time on my hands to build something that genuinely puts people with MG first.
But ideas alone weren’t enough.
I returned to university to study a Bachelor of UX and Web Design so I could make sure this thing was built properly and not simply thrown together. Every concept I learn goes directly into something I care deeply about.
As a UX student living with MG, I’m not simply designing this app. I’m designing it for my own worst days.
You may notice the deep, dark interface and vibrant, glowing borders in the screenshots of my designs. That is a deliberate choice.
When ocular MG causes double vision or severe eye strain, bright white screens can be absolute torture.
The high-contrast dark theme uses distinct, colour-coded sections—such as blue for symptoms and purple for medications—to make navigation easier when vision is fluctuating and energy is low.
TogetherMG is being designed to remain readable when your eyes simply do not want to cooperate.
I’m building this because we deserve better than a clinical data dump.
I’m building it for our good days, our bad days and everything in between.
Next week, I’ll show you how the first layout came together and introduce you to Snowie, the TogetherMG mascot.
Stay tuned.
