"Building Bridges from a World of Silence: Kana Tanaka's Challenge in Facing a Rare Disease"

*Information confirmed and partially updated as of February 20, 2026.

Kana Tanaka, diagnosed with the rare disease "Neurofibromatosis Type II" in the fifth grade, now lives as a wheelchair user and hearing-impaired individual. While thriving as a freelance writer, she continues to send encouragement to people in similar situations through social media.

This time, we asked her about how she copes with her illness, her journey to reintegrate into society, and her aspirations for establishing a new community.

1. Who is Kana Tanaka?

1-1. A Life Changed in Fifth Grade

[Interviewer (Writer): Akaishi / Interviewee: Kana]

Akaishi: What was your personality like as a child?

Kana: I was an active child. I loved sports and joined the local softball team with my brother and took hip-hop dance lessons.

Akaishi: You mentioned you were diagnosed with your illness in the fifth grade. How did you feel at that time?

Kana: It started with me tripping over jump ropes more easily, which felt strange. I still remember my mother breaking down in tears in the examination room when the diagnosis was given.

Being so young, I didn't quite grasp the seriousness of the illness, but seeing my mother blaming herself while being comforted by the doctor made me realize it was a serious condition.

After the diagnosis, adults at school and my dance school started telling me, "You don't have to push yourself." Now I understand they were being considerate, but at the time, it felt like I was being confronted with the fact that I was different from other kids, which was complex for me.

Akaishi: Could you tell us about your current symptoms and the nature of your illness?

Kana: It's a disease called "Neurofibromatosis Type II," which is designated as a rare disease by the government.

There is an abnormality in part of my genes, which prevents the proper formation of "tumor-suppressing cells" that everyone usually has. As a result, tumors develop throughout the nerves in my body.

There are many tumors in areas like my spinal cord and pelvis, but currently, we are mainly monitoring the more urgent tumors in my brain.

1-2. A Student Life Supported by My Mother's Determination

Akaishi: When did you inform others about your illness?

Kana: After my illness was discovered in the fifth grade, my mother informed the adults around us about it.

When I advanced to junior high and high school, she compiled information about my illness and symptoms into materials to share the daily challenges and necessary considerations with others.

Thanks to her, I was able to enjoy my student life without any inconvenience. Even though the internet wasn't as developed back then, my mother's earnest efforts were undoubtedly the backbone of my student life, despite me being a rebellious and uncooperative daughter (laughs).

Akaishi: How did you cope with your illness during your student years?

Kana: I was mostly rebellious during my student years.

I might have wanted to appear strong because I disliked being "different from others."

At that time, my symptoms were limited to mild weakness in my legs, but I remember living in a way that concealed it from others.

2. Starting a Career in My 20s

2-1. Hearing Loss and My Passion for Music Beginning at Age 22

Akaishi: When did you start experiencing hearing loss?

Kana: I started experiencing hearing difficulties around the age of 22 (9 years ago).

I completely lost my hearing two years ago (2023). At the time, I was involved in music activities, so losing my hearing was a huge shock to my life.

I've started learning sign language to engage in new forms of communication and communities, and I'm gradually looking forward. However, there are still moments when I wish I could hear.

2-2. Transitioning to a Life in a Wheelchair

Akaishi: Can you tell us how you came to use a wheelchair?

Kana: My condition involves tumors forming on nerves throughout my body, and the tumor on my spine caused significant weakness in my legs, while the tumor on my auditory nerve affected my vestibular system, leading to severe dizziness.

As I started falling more frequently, I decided to use a wheelchair.

Akaishi: Have you noticed any changes or realizations since transitioning to a wheelchair?

Kana: I already had some weakness in my legs, so when I was standing, I could only walk short distances.

With a wheelchair, I can travel longer distances, which has been beneficial for me.

However, once I started using a wheelchair, I realized how many barriers exist in society, such as the abundance of slopes, the scarcity of elevators and restrooms, and how everything is designed for people who are standing.

This realization is what motivated me to start sharing my experiences.

3. Transitioning from Corporate Employment to Freelancing

3-1. Complex Feelings in Disability Employment

Akaishi: You mentioned working under disability employment. Did you face any challenges?

Kana: I often encountered misunderstandings due to my inability to effectively communicate my hearing difficulties, leading to "I said" and "I didn't hear" conflicts.

Additionally, I wanted to take on more challenges, but I was often told, "You must be tired, so you can leave early," or "I'll summarize the content later, so you don't need to attend the meeting," which made me feel lonely despite their kindness.

Akaishi: Why did you choose to become a freelancer?

Kana: Working in a large group highlighted my "differences from others."

I felt a lot of pressure to "fit in" and "be normal," which was exhausting beyond the work itself.

That's when I decided to try freelancing, where I could work in a way that felt true to myself.

3-2. Career Shift During the Pandemic

Akaishi: What led you to choose writing and managing social media as your career?

Kana: After nearly a decade in the workforce, I began to understand my strengths and weaknesses. The pandemic prompted me to leave my job and focus on a field where I didn't have to worry about my disabilities and could utilize my strengths.

Since I was good at writing, I chose to become a writer. My personal Instagram account often serves as a portfolio, leading to opportunities in social media-related work.

Akaishi: Could you share the challenges and joys of freelancing?

Kana: The ability to choose my working hours is significant for me due to the fluctuations in my health.

Commuting on crowded trains when I wasn't feeling well was really tough, so having the freedom to work without being tied to specific days or times suits me.

However, since my income stops when I take breaks, I find myself working late at night or during travel when I'm feeling well (laughs).

4. A New World Opened Through Social Media

Akaishi: What led you to start sharing your experiences on social media?

Kana: Becoming a wheelchair user and hearing-impaired allowed me to discover a world I didn't know when I was healthy, both in good and bad ways. I started sharing my experiences as a record of that.

Akaishi: What do you mean by "both in good and bad ways"?

Kana: The positive aspect is that I've encountered kindness from others much more frequently.

When I was healthy, I never needed help from strangers, but now I often face challenges I can't overcome alone, which has taught me to ask for help and made me realize how supported I am by many people.

On the downside, I've become aware of the "barriers" that exist in society.

Many things are not designed with wheelchair users in mind, and many events lack information accessibility. I realized just how many barriers there are in society.

Akaishi: What have you felt through your social media activities?

Kana: Whenever I share about barriers or things that make me sad, I inevitably face criticism (laughs).

I feel that we're still on the way to change, but I hope society's awareness will shift, so I won't stop sharing.

Akaishi: What message do you want to convey through social media?

Kana: I aim to create an account where people in similar situations realize they're not alone, and to communicate to those who rarely interact with people with disabilities about the challenges we face.

5. New Challenges for the Future

Akaishi: Do you have any goals or aspirations for the future?

Kana: I'm planning to establish a community for people with hearing impairments. I felt very isolated when I lost my hearing, so I'd be happy to provide a safe space for those who don't know what to do.

I also want to continue sharing information on my social media. It would be great if I could reach more people with our world.

Akaishi: That sounds wonderful! What kind of environment or content do you envision for a "safe space"?

Kana: I lost my hearing in my 20s, and it made it difficult to join conversations with everyone around me.

However, I didn't know sign language, so I couldn't join communities for people who primarily use sign language either.

I didn't belong anywhere and didn't know how to live, which made me feel very lonely.

So, I want to provide a place for people with similar concerns to connect. I plan to organize seminars with necessary information for living in a world without hearing and hold regular in-person events.

Even if you face something hurtful outside, having connections with people who have experienced the same pain can help you look forward and say, "It's okay, let's keep trying."

6. A Message to Readers

Akaishi: What is your current driving force?

Kana: I receive a lot of encouragement from people through social media.

It definitely pushes me forward, and the connections I've made with others in similar situations are significant.

Friends with the same illness, wheelchair users, those with hearing impairments, and sign language friends... The many connections I've made here keep me positive.

Akaishi: Finally, could you give a message to readers who want to take on challenges but can't take the first step?

Kana: Life may seem long, but it's probably short.

I hope you cherish each day as if it's your last. While challenges come with anxiety, the fact that you "took on a challenge" will likely become a great source of confidence!

7. Conclusion

From Kana Tanaka's interview, we felt her strength in continuously moving forward while facing illness and disability.

Diagnosed with a rare disease in the fifth grade, experiencing hearing loss from the age of 22, transitioning to a wheelchair, moving from corporate employment to freelancing, and aiming to build a new community through social media, Kana's journey is inspiring.

What was particularly striking was her community concept for people in similar situations, born from experiencing "loneliness of not belonging anywhere." Perhaps it's because she knows her own pain that she can empathize with the pain of others.

Kana's words, "Life may seem long, but it's probably short," teach us the importance of living each day to the fullest.

We will continue to follow Kana's activities as she aims for a society where everyone, regardless of illness or disability, can challenge themselves in their own way.

Instagram
Hearing-impaired community run by Kana