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Profile: Defying rare medical condition and shining as psychological counselor

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E-mail Xinhua, June 29, 2023

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by Xinhua writers Chu Yi, Liang Zi

TIANJIN, June 29 (Xinhua) -- Wei Ruihong's struggles began a mere 28 days after her birth when she suffered her first fracture, and by the time she was 43, Wei has endured a staggering total of 31 fractures.

With a rare genetic disease known as osteogenesis imperfecta, which renders her bones as fragile as glass though, Wei standing just 1.2 meters tall has forged a resilient life that radiates with a brilliance akin to diamonds.

Surmounting numerous challenges, she completed the self-taught higher education examinations within a year and a half. Not stopping there, Wei authored two books, extended her support to thousands of families affected by rare diseases, and shared her optimistic and positive outlook on life with tens of thousands of individuals through psychological counseling.

AKIN TO PORCELAIN DOLL

"In my entire life, I had only less than a month of healthy days," said Wei, who hails from Guangping County in north China's Hebei Province.

"Just 28 days after my birth, I fractured my left arm, and soon I was diagnosed with osteogenesis imperfecta, often referred to as a 'porcelain doll' condition," she said. "I can't stand up, grow up and live long."

Doctors initially predicted that Wei's life expectancy would be a mere 11 or 12 years. They went so far as to suggest that her family should consider giving up.

"My grandfather was filled with fury upon hearing that. He said that his beloved granddaughter deserved to receive proper care and attention," she said.

Reflecting on her struggles, Wei described how pain permeated her entire childhood. She vividly remembers a particular incident when she was just five years old. "I eagerly tried to break a baked wheat cake, but to my dismay, my thumb ended up breaking along with it," she said.

The pain that sounds tormenting is actually the easiest kind of difficulty faced by people with "porcelain doll" condition. Because of limited mobility, physical fragility and stigma, many patients can only stay at home and be trapped in bed all their lives.

NO MORE TEARS

"My family has always made me believe that I am not defined by my illness. They have treated me like any other child except that I was short and unable to walk," Wei said. "My mother sent me to school and told me to listen to the teachers attentively, while my grandfather always took me to the theater and greeted everyone he met with enthusiasm."

Wei said that during her time as a student, she was fortunate to have encountered no discrimination from her classmates.

"I ranked among top few in my county in the senior high school entrance examination. However, I had to drop out of school due to physical limitations, which came as a significant blow and had a profound emotional impact," Wei said.

With broken bones, disability and the fear of being confined to home all her life, she found herself crying every day and even wrote many suicide notes.

One transformative moment came when Wei's school teacher paid her a visit. She brought a basin of water and imparted a profound piece of advice. "Shed all your tears today, then wash your face and reflect on how to navigate your future."

"My teacher told me tears would only cloud my vision and prevent me from seeing the path ahead," Wei said.

From October 2003 to May 2005, within a span of one and a half years, Wei successfully completed all 16 courses and earned a college diploma in psychology. Subsequently, in 2006 and 2009, she acquired the third-level and second-level qualification certificates, respectively, as a national psychological counselor.

"Once, I forgot to notify the exam authorities in advance, and no tables and chairs tailored to my height were arranged. I improvised by placing my bag filled with books and sat on it, which allowed me to write comfortably," she said.

"This incident struck a chord with me and I felt it mirrors my life. Being ill and physically challenged does not mean I am incapable. I must rise on my tiptoes to achieve my goals," Wei added.

GIVING BACK

"As a person with disabilities, I have received a lot of care and love from the society, which inspired me to give back through my own efforts," she said.

After obtaining her psychological consultant certification, Wei moved to Beijing to offer counseling services to patients at the China-Dolls Center for Rare Disorders.

"My own experience with illness made me more empathetic, and my phone has become a psychological hotline. Even normal people reach out to me to seek guidance," Wei said.

In 2012, Wei completed a 150,000-word autobiography. The following year she joined the department of osteogenesis imperfecta at the people's hospital of Wuqing District, north China's Tianjin Municipality, and established the Sunshine Counseling Center for Rare Disorders to assist more "porcelain dolls."

To promote employment opportunities for this special group, the center has introduced various courses, specializing in areas such as social work and psychology. It also regularly organizes handicraft classes and charity sales.

"Through these initiatives, we aim to facilitate social interaction and foster a sense of connection between the society and the 'porcelain dolls,'" Wei said.

"Physical disability does not equate to failure in life. Those with disabilities are not burdens to society, instead, we possess the potential to be a source of inspiration for others," she added. Enditem