Constant Medical Appointments

From an early age, I’ve had to endure semi-annual trips to see a specialist in Florida. Each visit felt like being part of an experiment, as I was subjected to various tests in a brightly lit environment. One particularly grueling test required me to focus on a central point while small flashing lights would appear in my peripheral vision. I often felt a surge of frustration during these sessions, questioning the necessity of such procedures. There were times when we had to leave early from outings, like Universal Studios, just to make these appointments.

In contrast, one test that isn’t as stressful involves lying in a dark room while my eyes are numbed. Although this process isn't unpleasant, the sensation of having what feels like fishing lines touching my eyes is still unsettling. These appointments often stretch for hours, leaving me exhausted and in need of rest afterward.

Challenges with Night Vision

A significant impact of RP is the substantial loss of night vision; I am approximately 97% night-blind. Transitioning from bright outdoor settings to dim interiors amplifies this issue, making even normally lit rooms appear pitch black. While this is undoubtedly frustrating, I find solace in knowing that many others face similar difficulties in low-light conditions. I recall a particular experience at Universal Studios where I struggled to navigate a dimly lit queue. Without assistance, I risked stumbling into obstacles, highlighting the everyday challenges I face.

Navigating Bright Environments

Whenever I step outside, the brightness feels overwhelming, as if the sun has drawn unnervingly close. This intense light sensitivity hampers my vision for several minutes until I adjust. Indoors, I also struggle with screen brightness; I rely on dark mode settings on my devices to read comfortably.

These visual challenges severely limit my participation in sports. For instance, I find football unplayable due to my inability to track the ball in bright conditions, while baseball presents similar issues. Even in basketball, the rapid movement of the ball proves difficult for my eyes to keep up with.

General Vision Experience

Describing my vision is akin to explaining a camera that struggles to focus. While people often assume I can’t see beyond a couple of feet, the reality is more nuanced; my distance vision is not entirely impaired, but my focus on objects diminishes with distance. Small text becomes nearly illegible, while I can better discern white text against darker backgrounds due to the way my eyes function.

Looking Ahead: My Future with RP

According to my specialists, my eyesight will likely continue to deteriorate, and while there is currently no cure, the future remains uncertain. Yet, I refuse to let the prospect of declining vision deter me from pursuing my goals and purpose in life. The journey with RP is challenging, but it does not define my aspirations.

An informative video explaining Retinitis Pigmentosa, its effects, and personal stories from those living with the condition.

A detailed overview of what Retinitis Pigmentosa is, including symptoms, causes, and potential treatments.