Rare Disease X File - Chan Ka Man

Chan Ka-man (Hester) is a name that has frequently appeared in medical news recently. "Three years ago, an unexplained illness put me in a wheelchair... Doctors diagnosed it as a rare disease." Her physical functions rapidly deteriorated, and in three years, she transformed from an active girl who could move freely into a person with multiple disabilities. "Every day I wake up and I'm still in this world, and I'm so grateful!"

Ka-man grew up in a single-parent family. Her mother works in a hospital kitchen, her younger brother has intellectual disabilities, and her younger sister has special educational needs (SEN). As the eldest sister, she became one of the family's financial pillars. After graduating from Form 5, she worked and studied part-time, dedicating six years to serving children with SEN.

"One day, my leg suddenly wouldn't lift when I was climbing stairs, and slowly both my legs became weak. I just thought I was tired and didn't realize there would be other problems." But that was just the beginning. Later, both her hands also became weak, and she developed difficulty swallowing. Gradually, her eyesight began to deteriorate, and her hearing also continuously weakened.

Ka-man recounted her degenerative process "like a household inventory":
"The pain in my tailbone affects my walking. I went from using a walking stick to a quad cane, then a manual wheelchair, and now a powered wheelchair—four stages..."

"I'm hospitalized again." This phrase, along with casual chats and encouraging words, is a regular part of my interactions with Ka-man. This interview hasn't even been published yet, and that phrase has already reappeared. "...No strength...can't...control...it's much worse...hospitalized..." Unable to type, Ka-man used her remaining strength to leave me a message.

During this admission, she appeared to be barely breathing, unable to straighten her neck, her hands trembling constantly, and she was wheezing. When eating, her head swayed involuntarily. I had to hold her head while mashing her food into a paste, and then use a special spoon to help her eat with great difficulty. Even for something as simple as drinking water, I had to help add a thickener to aid her swallowing, otherwise, she would "swallow wrongly and choke" and start wheezing.

"This time, my condition has deteriorated much more. There's no medication to control it, so I can only rely on physical therapy, occupational therapy, and speech therapy..." Each time she's discharged, she leaves with many questions because the cause is always unknown. "Sometimes, when one part of my body gets worse, it affects other parts too. This time, after being discharged, I have more painful areas. Sitting in class all the time is so painful, it's unbearable! For now, I'm using a waist brace for support, which helps a little."

More than a month later, Ka-man was hospitalized again due to persistent lower back pain. "Because it's twisted, I can't use any force. My pelvis and several segments above my tailbone hurt, it feels like the pain of ten sprained ankles combined. Painkillers are no longer effective, and the pain is so unbearable that I have to go to the emergency room for a painkiller injection and see a pain specialist, but for now, there's nothing that can be done..."

Just as I was imagining the intensity of this pain, the young lady was already worried about her packed schedule, needing to contact everyone to cancel! "Last time I was hospitalized for a week, I was supposed to go to a rare disease exchange event in Shanghai, but I missed it, there was nothing I could do. I couldn't attend classes, and many activities had to be canceled..." As she spoke, she couldn't help but smile again. Ka-man's optimism truly makes others feel ashamed by comparison.

However, even the strongest can be worn down. "For half a year to a year, I would hide myself at home, come back from follow-up appointments, and not want people to ask what happened or why... " The truth is, Ka-man also really wants to know "why." She sought treatment from specialists for examinations, but due to the unknown cause of her illness, she became a "ping-pong ball" of responsibility, only receiving treatment when her condition worsened, by which time her body was already in a much worse state.

Doctors can only categorize her illness as a degenerative disease, and not just one; various parts of her body are gradually deteriorating, and doctors are at a loss. This unnamable disease has become a medical X-File.

"Why should patients have to work so hard to find different letters to prove that their body is malfunctioning? When I can no longer walk or see, how will I advocate for myself?!" When she first sought treatment from an ophthalmologist, Ka-man had to strenuously argue to get an in-depth test. The result showed that her eyes were degenerating. With a smile usually on her face, she suddenly became serious: "How can a patient have to fight for an examination?!"

Without a doctor's diagnosis, treatment cannot even begin. Applying for government assistance is "ineligible" due to the lack of a diagnosis. Applying for other assistive facilities is also fraught with difficulties. Even a wheelchair, an adjustable table, or a pair of glasses requires "overcoming many obstacles" to obtain. "I honestly say, none of the wheelchairs were approved for me by the hospital!"

"Everything I get, I have to fight hard for, everything I get, I have to strive hard for!" Recently, Ka-man's wheelchair tire burst. She hoped to get a referral letter from the hospital to receive "at-home wheelchair repair" service. I accompanied her to three departments, and in the end, all we got was a helpless response: "They told me to go to a bike shop to change the tire myself!"

Watching Ka-man's emotions fluctuate from calm to agitated, and then to despair, I wondered: how could a wheelchair user with mobility issues carry that wheelchair tire across districts to find a bike shop to change it? Is it the system that's rigid, or people's hearts?

It's not just her deteriorating body that causes her so much trouble. She suffers from photophobia and night blindness, and her myopia and hyperopia constantly fluctuate in prescription, to the point that even ophthalmologists are helpless. However, the Comprehensive Social Security Assistance Scheme (CSSA) only approves a HK$500 subsidy for glasses every two years. She once traveled from Fanling to Grantham Hospital in the Southern District of Hong Kong Island to seek assistance.

"What I can do to help myself is wear sunglasses to protect my eyes. I'm not trying to be stylish!" Every time I go out with Ka-man, she brings multiple pairs of glasses; depending on the light, she switches between sunglasses, myopia glasses, or hyperopia glasses.

Facing unknown variables, Ka-man is actively learning Braille and orientation and mobility skills. "Using a white cane while in a wheelchair is a challenge. I want everyone to understand that there's more than one type of disability. There's no definition for disabled people, no definition for multiple disabilities, no definition for rare diseases... Why is Hong Kong so bad?"

Everything looks unpleasant, but Ka-man transformed it into a "gain." "I share my three years of experience with other patients, and it really helps, which makes me very happy." She believes that even if her past experiences didn't help herself, at least they could help others, and that is her greatest comfort. "Heaven is fair. It takes away your sight or your hearing, but your heart opens up, and you feel the things around you more." She cherishes everything she has now,

"Every day I wake up and I'm still in this world, which makes me very grateful. When I can still move and walk, I must enjoy it well." Ka-man has never given up on finding the cause of her illness, nor has she given up on her life. Every day, she challenges herself; she also frequently visits the children with special needs she used to serve and actively participates in various charitable activities, playing with children with rare diseases at amusement parks. She firmly believes that life can influence life, as long as one does not give up.

"You can't take anything with you, all I can leave are my memories, the happy memories I give everyone."

"Not getting any worse is already a win!" Ka-man, undaunted by the numerous difficulties, still hopes to live an infinite life within her limited time. She cast aside the shackles of immobility, persisted in achieving her "sea, land, and air" dreams, earning a black belt in wheelchair martial arts, paragliding, and diving, constantly daring to try and accept challenges, never giving up, thereby encouraging others: "As long as you change your mindset, people with disabilities can also create a new world."

Ka-man's next goal is to "don the square cap," and after completing her studies, she will intern at the special needs school where she used to work, providing free tutoring to children in need. She also hopes to publish a book, chronicling her personal experiences in diary form, with the aim of "life influencing life," thereby encouraging those around her.

Updated March 2021

Unidentified Rare Disease: Chan Ka-man Undergoes Stoma Surgery to Prevent Oesophageal Degeneration Chan Ka-man, whose bodily functions have been gradually deteriorating due to an unidentified rare disease, has experienced a fluctuating condition. Taking her physical condition into account, Lifewire purchased an oxygen concentrator for her last year to increase her blood oxygen levels and improve and alleviate breathing difficulties and airway problems.

In the middle of last year, Ka-man underwent a gastrostomy procedure at hospital to ensure her body could still receive nutrients even if her oesophageal swallowing function deteriorated. The operation was a success, and a suitable feeding tube will be fitted in due course. Ka-man has recently been experiencing more episodes of what appear to be muscle spasms; we hope to identify the cause and find a treatment. Let’s all send Ka-man our best wishes!

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