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Ash’s Keratoconus Journey

More than 317K people follow Ash Arellanes – @demi_the_vlog_dog – on TikTok because of the spirited, engaging, and informative video content she shares about her journey with keratoconus (KC), a progressive eye disease. It’s hard to imagine this 27-year-old young woman could barely see just six years ago. Her vision was blurry, coupled with an extreme case of night blindness. Thankfully, after treating her KC and using specialty contact lenses, Ash can see again. Now, she is committed to spreading awareness for this underdiagnosed, sight-threatening eye condition.

When Ash was a senior in high school in 2015, her vision started to decline. She was prescribed eyeglasses which did not help, and she continued to struggle to see in class. A year later, her eye doctor noticed Ash had a scratch in the cornea of her right eye and prescribed antibiotics, but when her vision continued to worsen a year later while she was pregnant with her first child, Ash knew something was extremely wrong.

Unfortunately, intervention was delayed further until Ash settled into motherhood, and by then, she was convinced her vision issues were related to anxiety – no one had told her otherwise. With her infant in the car one day, Ash pulled over, called her husband, and described heightened blurred vision that was preventing her from being able to drive which was both terrifying and dangerous. At home, Ash said she could not take care of her child, use her phone, watch TV, or manage the household. That’s when she went to another doctor, along with a corneal specialist, and they both said she had the worst case of keratoconus they had ever seen. This diagnosis came in 2018 – three years after Ash first noticed her vision had started to decline. Because her KC progressed so quickly, Ash experienced extremely blurry, triple vision, and the corneas of her eyes were bulging and cone-shaped.

Keratoconus has a genetic component, so with three children, now ages five, three, and nine months, Ash is diligent about eye exams – even at an early age. Her two oldest are already being watched for astigmatism which they could grow out of.

That is the most important part of her story – early diagnosis – sharing the fact that people should pay attention to their vision and be seen by an eye doctor. “I did not need to end up like this. No one should end up like me with it taking so long for a diagnosis and treatment. Now, I shout early diagnosis from the rooftop,” she added.

Part of shouting this message from the rooftop includes her TikTok videos where she describes her experience with KC, her daily routine with scleral lenses, and advocates for others who are trying to move forward with treatment.

Ash’s inspiration? “When I was diagnosed, I had never heard of KC in my entire life. I wanted someone to connect with so badly, so when I visited a KC clinic in San Antonio where there were others who also had the condition, I thought how great it would be to have a room where people can relate and share their story,” Ash explained, “I realized I was not alone and now I am connected to so many close personal friends – I love them all so much.”

The strongest message Ash gets across on TikTok is to get your eyes checked and do not give up.

To find a doctor near you to get screened for keratoconus, use our locator tool.

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