Nikolai Thadeus Mappatao, MD-MBA, Manuel Benjamin Ibañez, DPBO, FPAO

MANILA, Philippines — The DOH Eye Center – East Avenue Medical Center became a hub of knowledge, support, and inspiration as it hosted the first-ever Regalong Pag-asa Retinitis Pigmentosa Lay Forum on September 27, 2024. The event, which aimed to raise awareness on Ocular Genetics and address questions about Retinitis Pigmentosa (RP), brought together around 20 participants composed of patients, their caregivers and family members, Ophthalmology residents and fellows.

The Regalong Pag-asa forum, a collaborative effort of the DOH Eye Center’s Pediatric Ophthalmology and Strabismus Service, Low Vision Service, Retina Service and the Ocular Genetics clinic, the 1st clinic in the country to focus on inherited eye disease  marked a significant step in the journey toward greater awareness of RP. The forum aimed to offer insights from the various DOHEC subspecialty clinics into the condition, its genetics, and practical strategies for living with vision impairment, including the use of low vision aids.

Retinitis Pigmentosa is a group of inherited retinal diseases that lead to progressive vision loss. It affects thousands of Filipinos, but for many, information on how to manage the disease and navigate its challenges has been limited. The Regalong Pag-asa forum provided a space for open dialogue, medical education, and emotional support for individuals and families affected by RP.

Educating and Empowering

The forum featured a series of informative talks by experts in the field of ocular genetics and low vision care.Dr. Minerva Paris, the DOHEC Medical Retina and Uveitis fellow, designed her discussion about the disease entity to be easily understood by the patients and other lay participants. Dr. Manuel Benjamin Ibañez IV, the DOHEC Ocular Genetics Specialist, highlighted the genetics of Retinitis Pigmentosa. He discussed how RP is inherited, the different genetic mutations that cause the disease, and the latest research developments in RP treatment.

“The goal of today’s forum is not only to inform our patients but also to provide hope and a sense of community,” said Dr. Ibañez. “Retinitis Pigmentosa is a challenging condition, but through education, early intervention, and family support, we can help these patients live fulfilling lives. This event is just the beginning, and we hope to make it an annual gathering to reach more people.”

A Gathering of Hope and Support

Aside from the educational talks, the forum also emphasized the importance of practical support in managing low vision. Dr. Sheila Santos-Jimenez, DOHEC’s Low Vision specialist, showcased a range of low vision aids that could help patients navigate daily life more easily, such as magnifiers, screen readers, and specialized lighting devices. Participants had the opportunity to explore these tools and learn about their proper use.

As part of the forum’s efforts to ensure participants’ comfort, lunch was provided which allowed attendees to mingle and share personal experiences. This was a vital aspect of the event, as it fostered a sense of community among individuals facing similar challenges. It was also an opportunity for caregivers to connect, share tips, and offer emotional support to one another.

Looking Ahead: A Vision for the Future

Dr. Ibañez envisions the Regalong Pag-asa forum becoming a staple in the DOH Eye Center’s calendar of events, with plans to expand its reach in the coming years. “We aim to connect with more families, doctors, and patients across the country, raising awareness and offering practical solutions that can help improve quality of life.”

The success of this first forum highlighted the importance of providing spaces where patients and caregivers can come together, share their stories, and access valuable resources. The event also underscored the need for more education on RP, a disease that is often misunderstood or overlooked by the general public.