A post-80s girl who suffers from cerebellar muscular dystrophy and multiple epiphyseal dysplasia, a double rare disease, has a 1 in 100,000,000 chance of developing the disease at the same time, but fate chose her. She underwent 8 major operations before the age of 20. During her studies, she was constantly in and out of the hospital, and she changed from walking to relying on an electric wheelchair. Even simply eating a pork fillet egg burger or minced meat porridge became a problem, but she did not give up her life, worked hard to integrate into society and attended the rare disease summit. She even dared to try extreme sports and performed with singers in concerts without stage fright. She used her own experience to encourage fellow travelers to cheer up and break the shackles of illness. "There is no if in life, only now."
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Birth and disease are inseparable, first surgery at the age of 1
"I hope I can pass the harp level 7 exam this year, and then I will be admitted to the performance level teaching class. There will be a musical in December this year, and my family will start learning to write lyrics." Iris, a post-80s girl in front of her, is sitting She is in a wheelchair, but has a bright appearance. She is currently a harp player of the Hong Kong Inclusion Orchestra. She has participated in many music activities. Earlier, she was invited to participate in the TV commercial of the Immigration Department's replacement of a new smart ID card with artist Zhang Zhilin. There was also a TV advertisement at the end of last year. She performed with singer Eason Chan at the Hong Kong Enlightenment Orchestra Charity Concert, but it turned out that she had to work harder than the average person to control a 6-foot-tall and over 80-pound harp. "There are 7 harps for playing. Pedals, ordinary musicians can easily turn the keys with the pedals, but my disease affects my muscles and my endurance is weaker than that of ordinary people. When I play the piano, I have to hold my breath before I can play it in one breath. Practice, I tell jokes with people all day long, it’s an alternative physical therapy.”
Iris has been inseparable from the disease since birth. She was diagnosed with congenital dislocation of the hip from the beginning of babbling. She had to undergo surgical correction since she was one year old. The scar on her left leg accompanies her growth. Xiao Si dislocated his right hip again and had to undergo surgery to reset the hip.
Due to the surgery on her left and right feet, she has undergone 4 surgeries in just ten years. She went to high school and returned to a mainstream school. Since there is no elevator in the school, she sometimes asks her mother to carry the classroom up the stairs, and sometimes she has to use crutches to get around the classroom by herself. Stepping upstairs, severe scoliosis occurs in the middle third spine, and the spinal fusion surgery will be performed in the summer vacation. A 10-inch incision is made from the back to span half of the body, and two ribs are taken out to fill the scoliosis. At the same time, a metal bracket is implanted to wait. The bones fused on their own. This operation was excruciatingly painful. She had to insert her throat and use a pump to drain the blood in her lungs, and injections of morphine did not help to reduce the pain. Later, joint repositioning surgery was performed. It is concluded that a total of 8 surgical operations have been performed before the age of 20.
Unable to confirm the cause before the age of 30, people feel powerless: what is the reason for doing so many surgeries
When she was promoted to college, her condition was relatively stable, but another disease struck quietly.
During the summer vacation of the last year of her college accounting course, one day she walked to the bus stop and felt as if her feet were twisted, her upper and lower limbs gradually became weak, and at worst, she would pant even when she was lying flat on the bed and turned around, and she could not even swallow the minced meat in the porridge. , All the food can only be mixed into a paste and swallowed. The doctor could not find the cause for a while, which made her feel discouraged.
"I had so many surgeries before, I felt so powerless in life, I couldn't even shout, because the more I shouted, the more I gasped, and it became harder."
Because Iris can no longer take care of herself completely, and her mother has to work part-time and take care of her son who is also suffering from long-term illness, Iris is unaccompanied or provided to go to school, so she has no choice but to give up her studies. After successfully applying for electric wheelchair access and hiring an additional foreign domestic helper, the quality of life gradually improved.
She has never been identified as the cause. In 2015, a paediatrician applied for a fund to conduct a full genetic test for her, and it was confirmed that she suffered from multiple epiphyseal dysplasia and spinocerebellar muscular atrophy at the same time. It is estimated that the probability of simultaneous incidence is 100 million One, finding out the pathology made her gradually relieved.
She met a group of patients during her recuperation. In 2011, she first served as the volunteer secretary general and treasurer of the Hong Kong Muscular Health Association and the Mucopolysaccharidosis Association. Later, she was hired by the Rare Disease Alliance as the project coordinator. It was only last year that she retired due to physical problems. , during which they also participated in different types of activities or lectures, telling their own experiences and encouraging fellow travelers to cheer themselves up.
There is no if in life, only now.
Iris, a post-80s girl with double rare disease
Try different sports to encourage different possibilities in life with your own experience
As she gets older, Spinocerebellar Muscular Atrophy will suddenly affect her muscle coordination at any time, affecting her physical condition. Liu Bao, I also tried feeding corn flakes to the food tester in the supermarket, but it stuck in my throat and didn’t fall down, so I had to spend mineral water to fill it with water immediately, and my throat scratched afterward.” However, she also took advantage of the possibility of development in her life and participated in it. Concerts, try sailing, skydiving, diving and more.
"People ask me if I'm not afraid, I said that I'm not afraid of multiple surgeries, but would I be afraid of skydiving?" She hoped that everyone should see the difficulties of rare disease patients, and she said that people should try boldly, and should not be buried and limited. Own.
"There are no ifs in life, only now."
Together with Iris' condition, the Chinese University of Hong Kong Rare Disease Group Volunteer Service Team compiled the life stories of 17 rare disease patients into a book called "Looking for a Clover". It is expected to publish 21,000 copies, of which 19,000 will be donated to medical management. All clinical departments of the Bureau, the Faculty of Medicine of CUHK, the Faculty of Medicine of the University of Hong Kong and other institutions are expected to reach more than 50,000 medical staff, so that they can learn more about the experiences of patients with rare diseases. You can browse the Facebook official website of "Rare GoGo Rare Disease Student Group Service Team".
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