I have lived with hidradenitis suppurativa (HS) for around 30 years.
Lumps that kept returning. Pain I could not explain. Everyday life starting over again just when I thought things had healed.
For a long time, I had nowhere to share these experiences.
HS is often not visible to others.
Both the pain and the difficulties of daily life can be hard to explain, and there may be repeated experiences of not being understood.
I, too, spent a long time not knowing how to live with it.
Living with this condition taught me something.
Patients' everyday lives hold knowledge that matters to healthcare and research too.
But those voices were still struggling to reach healthcare and the wider community.
I wanted to help change that, little by little. That is why I founded HS Voices Connect Japan.
I work as a designer.
To me, design is work that gives form to people's voices.
It means giving shape to experiences that have not found words, and connecting people whose lives are not easily seen.
HSVCJ is a place for bringing patient voices together, sharing knowledge, and reaching wider society.
HSVCJ does not promote a particular treatment or way of thinking.
We aim to create a place where patients, healthcare professionals, and researchers can all feel comfortable taking part.
If you are struggling on your own right now,
there are people here who have had similar experiences.
There is no need to rush. You can start simply by learning more.
Tsuyoshi Kawakami, Representative, HS Voices Connect Japan
