Elliot tells us about what it is like having Adrenoleukodystrophy (ALD)
When I first started developing symptoms of ALD at age 11, I started to tell myself it’ll get better eventually however, when I got told that I had ALD at age 15, my whole life changed and I totally felt powerless. Even though my epilepsy, Visual impairment and adrenal insufficiency is stable at the moment, it is still incredibly sad for me and my family to go through a condition that was passed from my grandfather who died of the disease in 1970 (before I was born).
I found out about Alex TLC in circa 2015 whilst my mum was searching for a charity were we could make new friends, meet families and get support to get through such a tricky time. I have been to most of the weekend holidays where we got to have fun and meet new people. Thus truly shown to me that I’m not alone with a condition that makes me feel incomplete, vulnerable and, to an extent, invisible.