How it all began
When I was 7 in year 2 at school. I had an adrenal crisis though we didn't call it that. I had the physical sign of ALD which was pigmentation. I was ill with severe vomitting, nausea and diarrhea. As such I couldn't eat anything so I needed a saline drip. I was admitted to hospital and kept in isolation. I was in the hospital for weeks and when I got out I stayed at home for a month or so.
This hospital stay was a recurring ordeal for me happening every winter. I would get the same symptoms, get admitted and then recover. No one wanted me tested other than dr Chong. He sent me to the children's hospital, I don't remember the date but it was late 1999, where I was tested and it was confirmed I had ALD. At westmead I met professor Slink and professor Christoudulu.
I remember we had a meeting where they had a talk with my parents. I was told I had addison's disease and that for the rest of my life I had to take the pills.
So the mystery of why I got sick every year around the same time was solved. I now had regular checkups with the doctors taking as many as 20 days off school a year
I had a MRI scan every 6 months followed by a visit to the neurologist (prof Christoudulu). I had checkups with the endocrinologist (prof Slink) twice a year and lastly with the pedeatrician ( dr Chong) every 3 months.
I felt that Nothing changed and it seemed like a waste of time and money getting these checkups but now I am grateful for these as any change can be picked up.