Online Community for People with Hair Loss and Their Families [Hair Loss Community] Opened on Discord

■ Background of the Release

It is estimated that between 1.25 million and 2.5 million people in Japan suffer from some form of hair loss symptoms. The causes vary, including alopecia areata, trichotillomania, congenital hypotrichosis, and hair loss due to side effects of medical treatments. However, because it is not considered life-threatening, social awareness remains low, and currently, many affected individuals and their families continue to search for information in isolation.

Established in September 2020 and incorporated as an NPO in September 2021, ASPJ has set the vision of "a society where hair loss is not a handicap," and has developed a wide range of activities such as holding exchange meetings, giving lectures at educational institutions, and organizing awareness events. With a total of over 10,000 participants, the organization has centered its activities on operating communities to prevent the isolation of affected individuals and their families.

■ Background and Purpose of the Establishment

ASPJ currently operates a LINE group mainly for parents of children with various hair loss symptoms such as alopecia areata and trichotillomania, and the number of participants has already exceeded 120. In addition, we receive individual consultations daily via Instagram DMs, making us realize that there are many people nationwide who need information and support.

However, the LINE group had structural limitations. The procedure to join was complicated, taking time to connect. Important information and shared experiences flowed away, making it difficult to look back on them later. The experiences and wisdom that someone bravely shared could not be accumulated within the community.

To solve these issues and achieve the "accumulation of knowledge" that passes someone's experience to the next person, as well as "peer support across generations," we have decided to migrate and expand to Discord this time.

■ Reasons for Choosing Discord

Discord is a platform where people can participate while protecting their privacy without individuals being identified. The invitation process is simplified, allowing people to connect immediately when needed. Since channels are divided by topics, information can be searched and referenced later. By setting up dedicated channels for each generation from children to those in their 40s and older, a design that makes it easier to meet peers with the same worries is possible. We concluded that these characteristics are best suited for the shape of the community ASPJ is aiming for.

Furthermore, the current LINE group will continue as it is.
Discord is an evolved form of it, providing a richer place for connections.

■ Main Structure and Purpose of the Community

In this community, dedicated channels are set up for each symptom, region, generation, and purpose, designed so that connections matching individual needs can be born.

As symptom-specific channels, we have established places for interaction separated by symptoms, such as alopecia areata, trichotillomania, congenital hypotrichosis/ulerythema ophryogenes, and hair loss due to side effects of treatments like anticancer drugs. Precisely because they are peers with the same symptoms, they can safely share worries, experiences, and information that they can mutually understand.

For regional channels, we have set up 6 domestic blocks
(Hokkaido / Tohoku / Kanto / Chubu, Hokuriku, Koshinetsu / Kansai, Chugoku, Shikoku / Kyushu, Okinawa) and 3 overseas channels (Asia / North America / Europe & Others), which can also be utilized for real-life interactions with nearby peers and calling for tea parties.

In the generation-specific and worry-specific channels, topics corresponding to the unique concerns of teenage students, those in their 20s-30s, and those in their 40s and older are prepared. It is a place where realistic experiences suitable for life stages can be shared, such as wig debuts, how to consult with schools, coming out, treatment progress, workplace and romance, and anxieties about the future.

In addition to text-based consultations, we have also set up voice channels where people can easily connect by voice. By having a place to talk casually, we aim to provide a space that can answer the feeling of wanting to talk to someone, even if it's not enough to write it down.

At the core of this community is "peer support." Words from peers who have experienced the same things can sometimes reach people's hearts in a different way than words from experts. The experiences of senior affected individuals become the support for those who are struggling right now. We aim to nurture such a circulation of knowledge across symptoms, generations, and regions.

■ Hair Loss Community Participation Manual
https://docs.google.com/presentation/d/1VI5X-Yr8UirQlDm72hXpSeuEl97zT6c95tZeA_Iakfc/edit?usp=sharing

■ Future Prospects

Looking toward fiscal year 2027, ASPJ aims to expand its social impact, make policy recommendations, and expand its national network. As its foundation, this Discord community aims to become a "place to belong" where affected individuals can immediately connect when they need to.

In the future, we want to expand it into a place where not only individuals with hair loss and their families but also professionals who want to support them—such as hairdressers involved with wigs, makeup artists, fashion professionals, and wig makers—can participate. Affected individuals broadcast their real worries, and supporters respond to them. By repeatedly engaging in mutual dialogues, the scenes of wigs, beauty, makeup, and fashion will change, aiming for a platform that generates such a cycle where "easy-to-visit places" and "easy-to-choose options" increase in society for affected individuals.

Furthermore, through this community, we also want to build contact points with hair loss communities overseas. Including NAAF (National Alopecia Areata Foundation) in the US, hair loss support organizations in the West are large in scale and have high social recognition, and a culture where people do not give up on their dreams and possibilities even with hair loss has taken root, such as holding charity events and sports tournaments. By bringing such overseas examples and experiences to Japan, we aim to create a place where affected individuals can feel that "there are peers in the world," and to expand their future options regardless of domestic or overseas boundaries.

Even if you have hair symptoms or a disease, you don't have to give up. You can choose a style that is uniquely yours and a fashion that is uniquely yours. We will nurture this community as a step towards creating such a society.

Believing that by the time today's children grow up, an ordinary society will have been realized where "you don't have to explain why you wear a wig" and "choosing a wig is not something special," we will carefully connect each person's experiences and voices.

■ Organization Overview

Name: Specified Non-profit Organization Alopecia Style Project Japan (ASPJ) Establishment: September 9, 2020 (NPO Incorporation: September 9, 2021) Location: "sponge", 3rd Floor, Udagawacho Building, 14-13 Udagawacho, Shibuya-ku, Tokyo
HP: https://aspj.site
Instagram: @alopecia.style

■ Contact Us

TEL: 03-6821-5891 (10:00 - 18:00)