Content warning: This story includes references to mental health challenges and vision loss.
LHON, or Leber’s hereditary optic neuropathy, is a type of mito that has affected my family. It’s changed my life and the lives of many people I love. I’m sharing my story so other young people facing vision loss know they’re not alone.
Vision loss from LHON
I lost most of my vision when I was 8. My most vivid memory of that time is trying to read Harry Potter badge numbers and not being able to keep my eyes in focus. I remember thinking, ‘grownups wear glasses. Maybe they’ll help me, too.’ But they didn’t. I felt frustrated and upset when nothing seemed to work.
We tried multiple things to help my vision. Some made things worse. I carried a lunch box full of supplements everywhere. People could hear me coming by the rattle.
When I was 11, something unexpected happened. My vision improved. This is unusual in LHON, so while I feel lucky, I also feel a sense of ‘survivor’s guilt’ sharing my story.
Some improvements were physical. But I also adapted. I learned to work around the blind spots in my vision. It's pretty much second nature now. I don't even need to think about it.
Fatigue makes things harder. When I’m tired, my central vision becomes blurry, so I use my peripheral vision to read. One friend noticed it while I was reading. They suggested that I wasn’t even reading because of where I was holding my iPad. I explained it was like a camera that’s out of focus in the middle but clear around the edges.
At work, I’ve adapted too. One screen is very high up, so I can see things there when I need to. I can also look like I am touch-typing even when I am not, because I can see my fingers in my peripheral vision.
At school, I needed a slanted desk and a computer so I could make text larger. Because my vision loss wasn’t obvious, many teachers didn’t believe me. I got used to ‘faking’ eye contact during conversations.
Fatigue and headaches
For most of my life, I have struggled with fatigue and headaches. I often felt like I was running on empty, and no amount of rest seemed to help. When I get really tired, I get tension headaches across my forehead, it feels like my whole face is being ripped apart.
At work, I’ve learned to describe them as migraines. Otherwise people assume I just need a break or some Panadol.
After my vision improved, sport became a really freeing experience for me. I remember thinking "I'm gonna whack the life out of a hockey ball, because I can actually see it!"
But freedom came at a cost. I’d fall asleep on the train home because I was so exhausted, beyond what was normal for a teenager. The next day, I struggled to get out of bed, to make it to school. Now I understand that my cells struggling to make enough energy.
To any young person facing LHON or mito:
"You do not have to pretend everything is okay. You do not have to carry everything on your own."
- Ashlee
Looking after my mental health
Living with LHON affected more than my vision and energy levels.
LHON impacts many members of my immediate and extended family. As an inherited condition, it has shaped some challenges in family relationships. There were times in my childhood where LHON was something no one talked about. I knew that I wasn’t supposed to either.
Mental health has been the biggest challenge in my LHON journey. Things began to change when I left home at 18. I found a counsellor who understood. I built boundaries. I began to process what had happened, and what continues to happen in my family
One of the toughest periods for me was when another family member's vision started to fade, just like mine had. It was like being stuck on a railway track, watching the train barrelling towards me, knowing I couldn’t stop it. I just had to wait for the crash.
Because of my own lived experience, I recognised the emotional strain it can cause. I did my best to offer support in the ways I wished I’d had. I was open, available, and made sure they knew they could talk to me whenever they needed. Being able to show up for someone else in that way has been meaningful for me, and feels lhealing.
Reflecting on my life with LHON
I am now in my thirties, with a house, friends and a career. I would like to see more support available for people living with LHON.
I did not know about the Mito Foundation when I was younger. Having a community would have made a real difference. It would have helped me feel less alone.
GPs and other health professionals should always refer people they diagnose with mito to the Mito Foundation. It connects people not just to services, but also to others who understand. That connection matters.
To any young person facing LHON or mito: you do not have to pretend everything is okay. You do not have to carry everything on your own. You might make mistakes. You might wish you had handled things differently. That’s okay. You’re still here. You’re still moving forward. That matters.
I’m proud of you for taking the next step, even when it’s hard. I wish someone had told me that when I was younger.
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