Myositis Chat Japan
Myositis Chat Japan
Welcome to the "Myositis Chat Japan".
When diagnosed with dermatomyositis or polymyositis,
you may experience a variety of anxieties and worries,
not only about the disease itself, but also about treatment, medication,
daily life, work, and family.
"What is happening to my body?"
"I wonder how other people with the same disease are coping with this."
"I just want to talk to someone about it"
Wouldn't it be great to have a place where people can easily drop by and chat?
With that in mind, I launched this LINE OpenChat Community in March 2025.
Here, patients and their families can safely share their experiences and feelings.
Sharing not only information about disease,
but also positive moments in patients' lives, troubles, small discoveries,
and everyday events with someone who says,
"I understand," or "I felt the same way,"
can make our tomorrow a little easier.
And we believe that the individual voices exchanged here contain
important clues for improving healthcare in the future.
Things that only patients notice.
Things that only patients can convey.
We want this place to be a bridge that cherishes these "voices of patients"
connects patients with one another,
and conveys their stories to healthcare and society.
Don't keep it all to yourself.
Let's talk about it!
I hope "Myositis Chat Japan" can be a place where you can find some comfort.
Keiko Deshimaru
Founder of "Myositis Chat Japan "
1. Creating a safe space where patients with dermatomyositis and polymyositis, and their families, can talk freely.
2. Deliver Patient Voices to relevant companies and
medical administrative agencies.
3. Patient Empowerment
You are not alone!
The LINE OpenChat "Myositis Chat Japan"
is a chat room where patients with dermatomyositis and polymyositis,
and their families can talk to each other in a safe environment.
Those who use LINE can participate anonymously and for free of charge.
When you feel like you want to ask someone or you don't know what to do
regarding everyday concerns and questions about symptoms and illnesses,
you can easily ask questions and exchange information.
In the future, we plan to hold seminars where people can ask questions
to medical professionals, to exchanges with patient groups overseas
and to organize various other events.
Please click the "About LINE OpenChat" button below for more details and to join.
Clinical information alone doesn't fully capture the
"burden on daily life,"
"symptoms that are difficult to see,"
and "balancing treatment and side effects."
This summary focuses on
"anxiety about relapses, complications, and where to seek medical help"
and "support among patients."
Please see the "About Patient Voice" button below .
When you get sick, you tend to become passive,
simply being the one receiving medical treatment.
We value ensuring that each patient understands their disease and treatments,
and that they can approach their medical care and daily life with confidence,
while respecting their own feelings and hopes.
Furthermore, sharing experiences and information with others
who have the same conditions can reveal new options
and things you might not realize on your own.
Patients have their own voice,
and while cherishing that voice,
they choose to live a life that is true to themselves.
"Myositis Chat Japan" aims to foster the ability of each individual
to live life to the fullest through connections with other patients.