Dealing with Leber hereditary Optic Neuropathy (LHON) – Sevenstorys

Dealing with Leber hereditary Optic Neuropathy (LHON)

I never knew my father because he passed away when I was 9 months old and being the youngest among 3 siblings, raised by a single mum, I felt my mum’s pain and burden in raising us. When I was 10 years old, at a routine eye check- up, I failed the eye test and was diagnosed with Leber hereditary Optic Neuropathy, LHON in short. Leber hereditary optic neuropathy (LHON) is an inherited form of vision loss. Blurring and clouding of vision are usually the first symptoms of LHON. Over time, vision in both eyes worsens with a severe loss of sharpness (visual acuity) and color vision. Currently, there is no proven treatment or cure for this condition.

A lot of people have no knowledge about this condition and don’t understand the severity of this condition, some of them think it’s myopia and tell me to wear thicker glasses. I was ridiculed when I was in Primary and secondary school, they called me names like crossed eye, blind idiot etc. It’s very disheartening and hurtful so I often numb myself by looking blur and staying silent. I refused to use the visual aids because my peers would stare at me and made fun of me.

During my first year in Temasek Poly, I did not use the visual aids as I was so conscious of what my peers would think of me? I wanted to quit school then I thought of my mother, who work so hard to pay for a year of school fees so that I can study and not feel left out in society, so I told myself I must complete my studies for her. My mother is my biggest mentor, she spends quality time with me and encourage to never give up and work really hard for what I want. My grandfather is also my mentor, he taught me patience.

My teacher explained to the class about my condition and to my surprise, my classmates have been supportive and helpful. They offered to help me with my school work, notes and even tell me what’s on the menu when we have lunch together. I started to use the visual aids in school so that I can be independent and do well in my studies because I wanted my family to be proud of me.

On bad days, I sometimes wonder why was I dealt with such a bad hand? And just the thought of me eventually losing my eyesight completely brings me tears and shivers. When the time comes, I will use the walking cane but for now I know I am still able so I will keep going. I know I have to work harder as compared to my peers, so it’s a lot of discipline and effort. They can read notes faster than me and that’s a fact so it means I have to wake up earlier and spend more time studying, if my peers take 2 hours, I will need to put in 4-5 hours to revise for exams.

I’ve come a very long way and recently I was awarded the Temasek Student Excellence Character Award for my outstanding contribution to my school. After my graduation, I would like to get a degree and work for a bank as a fund manager. I think in life, we need to be brave in asking for help and never think that you are alone because there is always support around us. I am so glad I did not give up on myself, I am almost 70% blind, if I can keep working towards my goals, so can you.


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