Cross-Disease Event for Visually Impaired Patients

The Taiwan Foundation for Rare Disorders (TFRD) has held cross-disease events for three consecutive years as part of its efforts to help families with visually impaired patients share their experiences and support each other.

This year’s event was held at Taoyuan’s LuckyTime recreational farm. Von Hippel-Lindau syndrome(VHL) patients were invited for the first time, besides Retinoblastoma(Rb) patients, Alstrom syndrome patients, and patients with Marfan syndrome who participated in previous events. A total of 52 people attended the event, among whom are nine patients and 33 of their family members.

In the lecture ”Eyecare for patients with poor sight” at the event, Dr. Wang Meng-chi explained how these aforementioned four rare diseases cause vision impairment. During the lecture, a Marfan patient asked Dr. Wang about the selection of intraocular lenses and the treatment of surgical operations.

Dr. Wang reminded Alstrom patients, who would eventually become blind, that they need to choose proper treatments to help alleviate photophobia. To Rb patients with one of their eyes removed, Dr. Wang said they need to be particularly careful in protecting their remaining eyes in daily life or during exercise. For VHL patients, it is important to have their eyes checked and tracked regularly to minimize the irreversible damage to their vision.

Dr. Wang also shared some tips on how to keep eyes healthy, including eating food with natural antioxidants, as well as seeking professional assessments and treatments when necessary.

In the afternoon, farm staff organized several activities for the participants. Everyone had fun playing games on the grass. Afterward, they went on a guided tour of the agricultural environment of the farm. The patients, despite their poor vision, learned about mint and citrus-flavored herbs through senses of smell and touch. They collected ginger lilies and basil before making pizza together. They shared laughter while enjoying their tasty pizza.

Translator: Jonathan Wilson (Bruton disease), Reviewer: Alex Chiang