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

*Information was verified on February 20, 2026, and some parts have been updated with the latest information.

Kana Tanaka, diagnosed with the rare disease "Neurofibromatosis Type II" in the fifth grade, currently 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 faces 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: As a child, I was very active. I loved sports and joined the local softball team with my brother and took hip-hop dance lessons.

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

Kana: At first, I noticed something was wrong because I started tripping over jump ropes more easily. I still remember my mother breaking down in tears in the examination room when I was diagnosed.

Being so young, I didn't really understand the illness, but seeing my mother blaming herself while being comforted by the doctor made me realize it was a serious disease.

After the diagnosis, adults at school and my dance school started telling me, "You don't have to push yourself." Now I understand those words were meant to be considerate, but at the time, it felt like a reminder that I was different from other kids, which was complex for me.

Akaishi: Can you tell us about your current symptoms and what kind of illness it is?

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

There is an abnormality in part of the gene, and the "tumor-suppressing cells" that everyone usually has cannot be produced properly. As a result, tumors proliferate throughout the body's nerves.

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

1-2. Supported by a Mother's Determination During School Years

Akaishi: When did you inform those around you 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 materials about my illness and condition and shared the daily challenges and necessary considerations with them.

Thanks to her, I was able to enjoy my school life without any inconvenience. Even though the internet wasn't as developed back then, my mother's diligent efforts were undoubtedly a support during my school years. I was a rebellious and uncooperative daughter, though (laughs).

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

Kana: I was quite rebellious during my school years.

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

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

2. Starting Adulthood in Her 20s

2-1. Hearing Loss Began at 22 and Her Passion for Music

Akaishi: When did you start experiencing hearing loss?

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

I completely lost my hearing 2 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 establish new communication and communities, and I'm gradually looking forward. Still, there are times when I wish I could hear again.

2-2. Transitioning to a Wheelchair Life

Akaishi: Can you tell us about the transition to a wheelchair lifestyle?

Kana: The disease causes tumors to form on nerves throughout the body, and the tumor on my back 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: Did you notice any changes or realizations after transitioning to a wheelchair lifestyle?

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

Using a wheelchair allowed me to travel longer distances, which I found beneficial.

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

That's one of the reasons I started sharing my experiences, hoping others would become aware of these issues.

3. Transition from Employee to Freelancer

3-1. Complex Feelings in Disability Employment

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

Kana: I often encountered communication issues because I couldn't effectively convey my hearing difficulties, leading to misunderstandings like "I said" and "I didn't hear."

There were many jobs I wanted to try, but I was often told, "You can leave early if you're tired," or "You don't need to attend the meeting; I'll summarize it later," which made me feel lonely despite people's kindness.

Akaishi: Why did you choose to become a freelancer?

Kana: Working in a large group made my "differences from others" stand out.

I felt overwhelmed by the need to conform and "be normal," which was exhausting beyond the work itself.

That's why I decided to pursue freelancing, where I could work in my own way.

3-2. Career Shift During the Pandemic

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

Kana: After nearly a decade in the workforce, I had a better understanding of my strengths and weaknesses, so when the pandemic hit, I decided to quit my job and focus on a field where I didn't have to worry about my disabilities and could leverage my strengths.

I chose writing because I was good at it. Many of my social media-related jobs come from my personal Instagram account serving as a portfolio.

Akaishi: Could you share the challenges and joys of working as a freelancer?

Kana: Given the fluctuations in my health, being able to choose when I work is significant for me.

Commuting on crowded trains when I wasn't feeling well was really tough, so having the flexibility to work without time or day constraints suits me well.

However, if I take a break, I don't earn, so when I'm feeling well, I work late at night or even during travel (laughs).

4. A New World Opened by Social Media

Akaishi: What prompted 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 positive and negative ways. I started sharing as a record of that journey.

Akaishi: What do you mean by "both in positive and negative ways"?

Kana: On the positive side, I've encountered human kindness far more frequently.

When I was healthy, I never needed help from strangers, but now I often face challenges I can't overcome alone, so I've developed the ability to ask for help from strangers and feel more supported by many people.

On the negative side, I've become aware of the "barriers" in society.

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

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

Kana: Whenever I share about barriers or express sadness over certain comments, I inevitably face criticism (laughs).

I feel there's still a long way to go, but I hope societal perceptions change, so I won't stop sharing.

Akaishi: What do you hope to convey through social media?

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

5. New Challenges Towards the Future

Akaishi: Do you have any future goals or aspirations?

Kana: I'm planning to establish a community for people with hearing loss. I felt very lonely when I lost my hearing, so I would 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 to reach more people with our world.

Akaishi: The community 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 me unable to join in conversations with everyone around me.

However, I didn't know sign language, so I couldn't join the deaf community where sign language was the primary mode of communication.

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 offer seminars on necessary information for living in a world without hearing and hold regular in-person events.

Even if you encounter something hurtful outside, having connections with others who have experienced the same pain can help you face forward and say, "It's okay, let's try again."

6. Message to the Readers

Akaishi: What is your current motivation, Kana?

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

That support definitely pushes me forward, and the existence of friends in similar situations, whom I connected with through social media, is significant.

Friends with the same illness, wheelchair user friends, hearing-impaired 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. Taking on challenges can be daunting, but the fact that you "challenged yourself" 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 lifestyle, moving from being an employee to a freelancer, and aiming to build a new community through social media, Kana's journey is inspiring.

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

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

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

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Hearing Loss Community Managed by Kana