2018 Gathering of Patients with Rare Skin Diseases

The gathering not only showed the support for each other, but also made people with rare skin diseases feel stronger and powerful.

A gathering for different rare skin diseases is held on August 25. 64 patients who have Giant Congenital Melanocytic Nevus or Ectodermal Dysplasias and their family participated in the activity and shared the medical and life experiences of skin care.

Families of Ectodermal Dysplasias haven’t met each other for a long time. On that day, they exchanged the information of skin care in the gatehring in Yangmei, Taoyuan.

Furthermore, families of Giant Congenital Melanocytic Nevus have established their patient groups since 2014 – when they first met. Through the lead of chairman, families of Giant Congenital Melanocytic Nevus have strong cohesion, and the members contact by using Facebook and Line. On this kind of platforms, they can even contact people far from Hong Kong, and also invite them to join this gathering.

Ciao Che - a 5 year-old boy, had undergone surgeries for 9 times to get rid of the most part of nevus. He told participants what should be paid attention before and after surgery by his experiences. In addition, a 5 year-old girl Jen Jen, also happily told everyone that she was strong enough to face the surgery.

Project Manager of Sunshine Social Welfare Foundation - Ms. Li-Jen Juang - had a talk about her story with Giant Congenital Melanocytic Nevus on the gathering. The content included useful information of welfare service, and the method to face and accept ourselves by self-awareness.

Translator: Saya Tsai (SMA), Reviewer: Linda Tsai