"I Watch My Body Deteriorate" Do You Know the Rare Disease 'Soneowi Chukjeung'? [Interview]

YouTube Raising Awareness of Rare Diseases... "A Record Proving That I Am Alive"
Dreamed of Becoming a 'Movie Screenwriter'... A Dream Stopped at Age 25
Complaints About Treatment and Disability Diagnosis... Urgent Need for National Support
"Are You Drunk?", "Lack of Exercise" and Other Misunderstandings

The stroller Jisoo usually uses when moving around. Photo by 'Beetle' YouTube channel video capture

[Asia Economy Reporter Kim Soyoung] "This disease is physically exhausting, but it is also mentally very challenging. To watch your body gradually deteriorate while fully conscious..."

Jisoo Jeong (29, pseudonym) suffers from a hereditary rare disease called 'spinocerebellar ataxia.' It is a condition where the cerebellum, which commands the muscles to move, deteriorates, making it impossible to control muscles voluntarily. Symptoms such as muscle stiffness, decline in vision and cognitive function, and memory loss gradually appear.

Jisoo's first symptom manifested as a walking disorder. Five years ago, at age 25, she felt like she was about to fall while going downhill, and gradually noticed abnormal symptoms in her body. While descending stairs, her body swayed forward. At first, she thought it was nothing serious, but a growing sense of anxiety filled her heart.

The disease portrayed in the movie "1 Liter of Tears" was exactly the same as Jisoo's symptoms. This film, which moved the Japanese archipelago to tears, is a dramatization of the real-life battle diary of a girl suffering from spinocerebellar ataxia.

Despite ongoing symptoms, even after X-rays and MRIs, the only response was that it was probably due to stress because her condition was not good. It took quite a long time to be diagnosed with her current disease, passing through local clinics, orthopedic and neurology departments at regional university hospitals, and finally the largest hospital in Korea.

This disease progresses at different rates for each person, and symptoms worsen over time. Since there is no immediate treatment, Jisoo currently visits the hospital every three months for activity rehabilitation. She always carries a stroller when going out, but with the mindset of "I'll do as much as I can on my own," she does not neglect daily activities, exercise, and farming. She has been active on YouTube under the channel name 'Biteuli' since December last year.

An article written by Jeong Jisoo (alias). He experiences difficulty writing due to essential tremor (trembling symptoms). Photo by Jeong Jisoo (alias)

- How much exercise do you usually do?

▲ I use a pedometer, and when I walk more than 3,500 steps, my muscles stiffen, making it difficult to continue walking. I usually walk about 3,500 steps according to the pedometer.

- It seems you have developed your own exercise know-how.

▲ Yes. Interestingly, whenever I feel it’s hard to walk, checking the pedometer always shows around 3,500 steps.

- You must be busy with YouTube filming even when taking walks.

▲ That's right. Even if it looks like I’m not doing much, I’m actually very busy. I set up the camera on a tripod, film, then go back to retrieve it. Filming YouTube videos requires going back and forth, so I end up exercising more. Although I didn’t intend to exercise, it unintentionally has an exercise effect. (laughs)

- What made you start YouTube?

▲ First of all, this disease is not well known, so many people misunderstand it. Spinocerebellar atrophy is a very serious disease, and while doctors understand its severity, many people do not. Also, because it is progressive, at first glance it doesn’t look that severe, leading to many misunderstandings. Patients often receive harsh remarks like, "Are you sure you don’t have another disease? Are you not exercising enough? Do you lack willpower?" They say such things easily. I thought YouTube would be a way to clear up these misunderstandings and to inform the general public about the disease in an easy-to-understand way. The purpose of filming YouTube videos is to raise awareness about the disease among many people.

Also, as the disease progresses, no one else is there to film me. I want to cherish this moment. In the future, if my condition worsens and I can no longer film YouTube videos, watching the videos I recorded will be a gift to myself.

- Standing in front of the camera is not easy. What is your usual personality like?

▲ Sometimes during interviews, people ask how I can speak so confidently in front of such a big camera without trembling, but honestly, I do get very nervous inside. I originally didn’t like being in front of the camera. But after getting sick and becoming unable to do anything, I felt like I was socially finished. So I thought, if I try this and it doesn’t work, then I’m done. Since it was a matter of life and death, I think I was able to do it without trembling. I no longer cared if I made mistakes, misspoke, or failed to convey my intended meaning.

The past appearance of Jisoo. Photo by Jisoo Jeong (pseudonym).

- You shared something important. If everyone had that mindset, nothing would be impossible.

▲ That’s right. After getting sick, I changed a lot. Before, I would hesitate, thinking, "Won’t this cause problems?" and I missed many opportunities. But now, I try things, and if it doesn’t work, I’m done anyway. I put aside those worries and do what I want. So even putting my face out there to raise awareness about the disease was a bit worrying because I thought friends and relatives who saw me before my symptoms worsened would see it. I even thought about not doing it, but I don’t have much time left to worry about those people. So I just decided to do it.

- What thoughts do you have most recently?

▲ Since I started YouTube, many people watch and learn about this disease and send me lots of support. As my subscriber count has grown significantly, it sometimes feels like a job. I feel pressure to film good videos that help fellow patients and inform people about the disease. Many people have high expectations of me, and I worry about not meeting those expectations. So lately, I’ve been trying to calm my mind and remind myself that YouTube is not work but a "record proving that I am alive," and I keep training my mind that way.

Most of Jisoo's videos end with a text capturing the emotions of the day. Photo by Biteleui, YouTube channel video capture

- Many people find comfort in the writings you share at the end of your videos.

▲ Before I got sick, I really liked writing. I didn’t write essays or such, but novels, especially in the horror and thriller genres. I wrote web novels as e-books and sold them. After getting sick, the writings I put in my vlogs were honestly not meant to show off my writing but to record my daily life and feelings at the moment. I’m proud and happy that many people like them. Since people see my writings in everyday life, I’m even thinking about making a calendar with my writings included.

- I’d like to hear more about your favorite stories. Did you dream of becoming a writer?

▲ I liked movies that most people frowned upon. What I wrote was either bloody or thrillers involving killing people. To be precise, my dream was to be a movie scriptwriter. Before getting sick, I wanted to turn my webtoon into an animation or movie. I contacted illustrators, animation directors, and movie directors to create my work, but after getting sick, honestly, since even speaking and moving are difficult now, it’s hard to continue that work.

Issued disability certificate. According to Jisoo, it is not easy for patients with early to mid-stage cerebellar atrophy to receive a disability diagnosis. Photo by Jisoo Jeong (pseudonym)

- Are there difficulties in receiving support for the disease?

Currently, there is no treatment specifically for spinocerebellar atrophy. There is a 'OOOO' drug, but it is a 'palliative' rather than a treatment. Originally, it is a chemotherapy drug. It is very risky for people without cancer to take such a strong chemotherapy drug. Neither the government nor pharmaceutical companies are interested because it is a rare disease, so clinical trials are not conducted. Also, since it is a leukemia treatment, it is not covered by insurance for us, making it very expensive, and it does not work 100% for everyone. Still, patients take it hoping it might work for them, risking themselves by conducting self-experiments.

Disability diagnosis usually comes only at the late stage when one is wheelchair-bound and unable to do anything. But by then, even if benefits are given, it’s hard to use them. The people who really need benefits are those transitioning from early to mid-stage, but when these patients apply for disability diagnosis, they often receive mild or no diagnosis. So, practically, there is almost no help from the government.

- As you mentioned earlier, you must have been hurt by people judging you just by appearances without knowing what kind of disease you have.

▲ Many people mistake my walking for drunkenness. But I wish people wouldn’t justify hurting others by saying "I didn’t know." They use ignorance as a shield to say harsh things and hurt others. Later they say they didn’t know, but honestly, if you don’t know well, you shouldn’t speak so easily. Even though I know they don’t mean it, it still hurts.

- You spent a frustrating time visiting many places and days trying to find the cause before being diagnosed.

▲ At that time, I kept visiting different hospitals thinking there must be medicine or surgery to cure whatever was wrong. If my body was uncomfortable or unwell, I wanted to detect it early and fix it quickly, so I went to many hospitals. Eventually, when I went to the largest hospital in Korea, the doctor said there was nothing the hospital could do, and I stopped going to other hospitals. Doctors know the reality well and told me that pharmaceutical companies are not interested in this disease, clinical trials are almost nonexistent, and the chance of new treatments is slim. Since the disease is progressive, they advised me to make many good memories with family and do what I want before it progresses too much. When I was diagnosed, it felt like a death sentence.

- What symptom troubles you the most?

▲ I’m not too worried about my legs because I can find ways like wheelchairs or disabled taxis, but I feel my vision has worsened a lot compared to last year. When I lower my eyes and then suddenly raise them, it’s like the camera focus is off, and my eyes don’t focus properly. I worry about my eyes, so I buy artificial tears and try to exercise my eye muscles whenever I can. But even at the ophthalmologist, they say there’s no treatment. If either my eyes or limbs were impaired, I could adapt to one, but since both are deteriorating, it’s really tough. These days, even managing my own mind is difficult.

- Have your feelings about others’ gazes or your mindset changed?

▲ Honestly, appearing in the media doesn’t mean everyone understands my disease. People’s stares are almost the same, but now my mindset has changed so that I don’t care as much about negative looks from others. In the past, when people stared, I felt intimidated and walked as if I had committed a crime. I built walls with people and thought everyone hated me or looked down on me. But after doing YouTube, I realized that’s not true. Now, because I think there are many kind people, including my subscribers, who watch and support my painful condition, I have gained the courage to face people’s stares confidently.