Interview for XLIS Parent Jenna Chen (P5B Hank’s Mom)
At the end of February, a meaningful exhibition of Rare Diseases was held at XLIS, which brought the concept of “rare diseases” closer to students for the first time and gave us an initial understanding of this special group of people (A Rare Disease Exhibition at XLIS Let the Rare Been Seen). Meanwhile, we were able to take this opportunity to interview Ms. Jenna Chen, the initiator of the exhibition as well as mother of Hank, a P5B student at XLIS, listening to her story with the rare diseases.
The story began in early 2019. Jenna probably would never have been focusing on those who got rare diseases, which is relatively far away from most of the people’s daily life if she had not been diagnosed to suffer from a disease called Familial Hypercholesterolemia. It was the first time that she had ever been able to get a deep understanding of this special group of patients and experience the daily struggles faced by each individual, as well as the frustration that the whole family suffered in the long term.
The initiative of bringing the Rare Diseases exhibition into our campus came from a fact that the first onset of many rare diseases occurs in one’s childhood. Due to obvious differences in appearance and behavior from other children, the children with rare diseases usually suffer from different attitude from teachers and classmates. Some of them are even rejected by schools, thus missing out on the opportunities for schooling and growing up like others. It can not be denied that the prejudice to the rare disease patients is mainly caused by the lack of awareness people may have about such diseases. Lack of awareness can lead to lack of understanding and the prejudice that comes with it.
What are rare diseases? Why do we hardly see patients with rare diseases in public areas? What are the hidden dangers faced by those who have a rare disease? What are the difficulties in the treatment process? Why is it necessary to publicize rare diseases in schools?
This is a patient’s narration，and also a parent’s sincere initiative.
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Author: Fancy Fan (Admin Officer)
Video by: Fancy Fan (Admin Officer)
