YUDELKYS CUSTODIO

Condition: Dry Eye

Yudelkys Custodio shares a powerful, emotional personal health journey. “I lived a normal life and was always very healthy – not even a cold. When my eyes began to tingle, I didn’t give it any thought. But little by little, the vision in my left eye worsened. I saw my PCP in March 2011 who thought it was likely a pollen allergy.

A few months later, in June, I attended my son’s graduation from the fifth grade with my best friend. My condition had worsened, alarming my friend, who insisted on taking me to an emergency room. The physicians there did a workup, but urged me to see a specialist as soon as possible.

On a Monday a month later, I met with a specialist and underwent a nasal endoscopy. I was diagnosed with a paranasal tumor with orbital involvement. On Wednesday, the tumor was biopsied. Of the four tumor classifications, I had a grade IV; a tumor that can grow and spread quickly.”

According to the American Cancer Society, for these types of cancers, surgery in conjunction with other treatments, like radiation and/or chemotherapy offer the best results.

The nasal cavity and paranasal sinuses are close to many important nerves, blood vessels and other structures. The brain, eyes, mouth, and carotid arteries are also close by, making surgery difficult. The goal of surgery is to remove the tumor and keep a small amount of tissue around it while keeping appearance and function. Because of the complexity of the operation and how rare these cancers are, it’s critical to be in the care of a surgeon who has had experience in this treatment area.

“To reduce the tumor, my surgeon started me on a treatment protocol with aggressive courses of chemo, followed by radiation. The side-effects were severe. Hair loss, insertion of a feeding tube because I lost my ability to swallow, no function in my hands or legs – my entire body shut down. Then, when the tumor reduced, I had two surgeries within days of each other.

They were invasive and affected my face, eyes and teeth; I required a facial skin graft. I spent a month in hospital, then home to recuperate with the support of a nurse and my mother.”

Yudelkys started rebuilding her life. It was a challenge as she felt so very broken. She needed implants for missing teeth, reconstructive surgeries, and a therapist to help navigate the trauma she’d suffered. Most troubling was her left eye had blurry vision and constantly teared. An ophthalmologist diagnosed her with exposure keratopathy secondary to scarring of the left lower lid, following her reconstructive surgeries. The scarring caused incomplete closure of her left eye when she blinked, leading to decreased lubrication of the ocular surface, a form of dry eye syndrome. She was referred to BostonSight for PROSE treatment.

Yudelkys benefitted from the Unite for Sight Patient Financial Assistance program, funded by generous charitable gifts. “I began treatment for my left eye in October 2019. I am grateful for the compassion of Chirag Patel, OD, FAAO and Heidi Wolfe. I wear my device daily protecting the surface of my cornea from dryness caused by constant exposure. It helps immensely, minimizing tearing and making me feel like a normal, whole person again.