Keratoconus Journey: Sinclair
Sinclair had always had 20/20 vision. She was born with Down Syndrome, so staying on top of any emerging health concerns, including eye conditions was imperative. She visited an eye doctor regularly to make sure of this. This made it all the more shocking and frustrating to learn that at age 23 she had been living with keratoconus for three years.
Unfortunately, individuals with Down Syndrome are up to 30% more likely to develop keratoconus than the average person.1,2 It’s one of many health conditions the Down Syndrome community has to be on the lookout for so that they can be diagnosed and treated as quickly as possible. While functional eyesight is highly valuable for everyone, the idea of losing this sense bears extra weight when it comes to those who live with an intellectual disability. The impact of vision loss on Sinclair’s life would be devastating, so she and her mom knew they needed to seek out treatment immediately.
Keratoconus is a progressive disease, which means that if left untreated it can continue to get worse and affect vision. This is why regular eye exams are essential for early detection and treatment. Timely diagnosis of keratoconus can prevent vision loss and improve overall quality of life for everyone, especially those living with intellectual disabilities.
Unfortunately, Sinclair’s diagnosis came at an inconvenient time: the height of the COVID-19 pandemic. This made the path toward treatment a little bit trickier, but Sinclair and her family were not discouraged. Her mother, Kim, even resorted to looking up fax numbers and faxing different doctors’ offices pictures of Sinclair daily until she finally received a call back.
The search was also complicated by the fact that Sinclair and her mom only felt comfortable looking for a doctor who offered iLink, FDA-approved cross-linking for progressive keratoconus, under anesthesia. The first doctor they met told her she would need to train herself to keep her eyes open and not blink, which seemed like an impossible task.
Then came the call from Dr. Maanasa Indaram at the University of California, San Francisco (UCSF). Sinclair and her mother said they immediately felt comfortable with Dr. Indaram and scheduled her iLink procedures right away, taking place in December 2020 for her left eye and February 2021 for her right. “She made me feel comfortable”,” Sinclair said. “[During the procedure,] she even played my favorite soundtrack to help me stay calm, the Disney Descendents soundtrack.”
Since her iLink procedures, Sinclair has seen a significant improvement in her quality of life and is back to doing the things she loves. She works at a bridal shop, where she helps brides pick out beautiful dresses every day. She also takes part in public speaking engagements where she educates elementary students about Down Syndrome.
“I like to bring marshmallows to the class so that the audience can put them in their mouths and try to talk. That’s what talking with Down Syndrome feels like,” Sinclair says. “I want to be able to show them how different my life is than theirs, but at the end of the day, I want them to see that I still love being me.”
Community is a huge part of Sinclair’s life. In 2015, she and her mom founded a local yogurt shop that only employed people with intellectual disabilities. It was a wonderful place for employees to come learn marketable skills and work together to create a warm environment that the neighborhood loved.
On top of working directly in her community, Sinclair is also very active in the Down Syndrome advocacy community, regularly attending conferences and events like the National Down Syndrome Congress. Since her keratoconus diagnosis, Sinclair and her mom say that the resources made available to them through the connected Down Syndrome community allowed them to find the treatment they needed, but there is always room to speak up. “I wish I had known how prevalent of an issue this could be for Sinclair,” said Kim. “Sinclair and I tell everyone we can about her diagnosis and journey through treatment, and I hope we can encourage even one person to learn more about it and take proactive steps toward early diagnosis.”
We connected with Sinclair and her mom to discuss her experience with progressive keratoconus and how iLink® has helped her halt the progression of the disease. Watch the full video below to learn more!
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The results described on this site are based on data collected regarding short- and intermediate-term efficacy of treatment. Individual results are not guaranteed and may vary.
- Alio, J. L., Vega-Estrada, A., Sanz, P., Osman, A. A., Kamal, A. M., Mamoon, A., & Soliman, H. (2018). Corneal morphologic characteristics in patients with down syndrome. JAMA Ophthalmology, 136(9), 971. https://doi.org/10.1001/jamaophthalmol.2018.2373 ↩︎
- Kristianslund, O., & Drolsum, L. (2021). Prevalence of keratoconus in persons with Down Syndrome: A Review. BMJ Open Ophthalmology, 6(1). https://doi.org/10.1136/bmjophth-2021-000754 ↩︎