My journey with blindness from Bardet-Biedl syndrome began as a child
The first sign of an issue with my vision happened when I was 2 years old
Written by |
When I think about how Bardet-Biedl syndrome, an inherited multisystemic disorder, has affected my life, the first thing that comes to mind is how much my vision has been affected.
My journey with vision loss began very early in life. I was around 2 years old the first time I expressed, “It’s dark.” This was the first sign of an issue with my vision. I was diagnosed with night blindness around age 4. At that age, my vision didn’t affect my life much yet, except that I was scared of the dark.
As a young girl, my daytime vision was fine. Then, one day in grade school, everything started to change, and I will never forget that moment. I was in the fourth grade when my vision abruptly changed. This is where the hard journey of beginning to navigate vision loss really began.
I vividly remember that, suddenly, I could no longer read the chalkboard, and I couldn’t see the fine line of a pencil anymore.
From that point forward, my vision continued to worsen. By sixth grade, worksheets were becoming harder to see, and I was struggling to read the whiteboard. Around this time, I was diagnosed with legal blindness.
Middle school was the time when my vision truly began to change. I needed enlarged worksheets, giant textbooks, and markers to complete assignments. Middle school was tough.
In high school, my vision continued to slowly worsen, and I needed even more accommodations. If it weren’t for my incredible teachers and the accommodations I received, there is no way I would’ve made it to graduation.
Those accommodations ranged from bold-lined paper and markers to large-print worksheets, teacher-provided notes, a CCTV, and textbooks loaded onto an iPad so I could zoom in and adjust the contrast.
One of the hardest parts of school was being teased and watching my friends begin driving while I could not.
Today, my visual field is extremely narrow, and I am mostly blind. One of the biggest hurdles in my journey was coming to terms with my blindness and accepting it for what it is. That process took years, but acceptance became freeing and empowering. It meant no longer hiding my disability and finally embracing the use of my white cane.
Living with progressive vision loss and blindness has been hard. At the same time, I have learned resilience and determination. And the biggest lesson of all is that a meaningful, full life is still possible without sight. It just takes some adaptation.
Note: Rare Obesity News is strictly a news and information website about these disorders. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Obesity News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare obesity disorders.
