Illness is not a matter of personal responsibility. Yet, society treats it as one.

Why I, in my 15th year of nephrosis, want to gather fellow patient-researchers

.... It has been 15 years since I developed nephrotic syndrome.

15 years is a blank space if written on a resume.
It is a clinical course if written in a hospital chart.
It is a cause for worry if told to family.
It is a subject for accommodation if told to a company.

However, within the individual's own body, it is a single research project.

The swelling when waking up in the morning.
The numerical value of urinary protein.
The emotional instability on the day I take Prednisone.
The anxiety the day before a hospital visit.
The sensation of physical strength suddenly dropping during work.
The silence of hesitating over how much to tell a romantic partner about my illness.

These are unlikely to become medical papers.
But they are data that certainly exist.

Primary nephrotic syndrome is explained as a disease where a large amount of protein is excreted in the urine, leading to a decrease in blood protein and causing symptoms such as edema. It is estimated that 6,000 to 7,000 people develop it annually, with a total patient population of approximately 17,000.Intractable Diseases Information Center)

Looking at these numbers, nephrosis is a rare disease.
However, from the perspective of those affected, it is anything but rare.

It is happening inside my body every morning.
It is the most familiar disease in the world.

Patients are observers before they are research subjects.

Medicine has researchers.
Hospitals have doctors.
Systems have administrators.

So, where are the patients?

In most cases, patients are placed on the 'side being examined.'
They are examined, tested, prescribed medication, and monitored for progress.

Of course, that is necessary.
Medical decisions should be made by experts, and it is dangerous to change nephrosis treatment based on self-judgment. The kidneys are not something that can be persuaded by sheer willpower. They respond silently with numerical values.

But even so, I think.

Patients are not just beings to be examined.
Patients are also the people who have observed their own bodies for the longest time.

In the world of research, there is a concept called 'Patient and Public Involvement' (PPI), where patients and citizens are involved in the planning and evaluation of research. The AMED explains PPI as something where patients engage with researchers and express their opinions, distinguishing it from mere research participation.Ministry of Health, Labour and Welfare)

In other words, this is not my delusion.
The times are gradually shifting from the stage of 'keeping patients outside of research' to the stage of 'thinking together with patients.'

The problem is that this trend has not yet reached the reality of daily life.

People with intractable diseases are difficult to see within the system.

People with intractable diseases are placed in a strange position within society.

To healthy people, they are sick people.
To the medical system, they are patients.
To companies, they are workers who require accommodations.
To the welfare system, they are recipients of support.

However, none of these labels describe the person as a whole.

People with intractable diseases work.
They fall in love.
They watch movies.
They listen to music.
They write notes.
They feel sudden loneliness on the way home after being careful at work.

And each time, they engage in a small negotiation between their own bodies and society.

This negotiation is almost never recorded.
What is not recorded is not reflected in the system.
What is not reflected in the system is treated as if it does not exist.

This is the mechanism by which people with intractable diseases become invisible in society.

In the era of Oppenheimer, scientists gathered.

There was once a time when scientists gathered in one place to conduct research that would change the world.

It was the era of Oppenheimer.

Of course, what was born there is far too heavy for humanity.
It cannot be simply affirmed.

However, there is one thing we can learn.

Knowledge does not change society when it is merely scattered.
When people gather, engage in dialogue, take on roles, and face a single question, knowledge gains power.

So, what about people with intractable diseases?

People with nephrosis possess a vast amount of data within their own bodies.
However, it is scattered as individual memories.

One person is knowledgeable about the side effects of medication.
One person knows how to manage work.
One person has struggled with how to disclose their illness in romantic relationships.
One person carries the anxiety of hospital visits and income.
One person can organize medical information using AI.

What would happen if we gathered this?

It is not a place to decide on treatments on our own.
It is not a place to replace doctors.
It is not a place to discuss conspiracy theories.

Instead, it is a place where those affected can organize their own lived knowledge.

What we need might not be patient support groups, but 'research institutes for those affected'.

What I want to create is not just a place for mutual comfort.

Of course, comfort is necessary.
Having someone who says 'I understand' on a lonely night works in a way that medicine cannot.

However, that alone is not enough.

What is needed is a small research institute with defined roles.

For example, there are roles like these.

Role Description: Life Recorder - Records changes in physical condition, medication, work, and emotions. Medical Information Officer - Reads public information and guidelines, and organizes key points. AI Utilization Officer - Summarizes information and formulates questions. Editorial Officer - Compiles content into notes or articles. Ethics Officer - Manages risks related to personal information and medical advice. Dialogue Officer - Creates a space to prevent isolation.

This does not need to be a large organization.
Three people are enough to start.

One is the person affected.
One is the person who records.
One is the person who poses questions.

With just that, illness moves slightly away from being a purely personal misfortune.

AI is not a doctor. But it can become a scribe for patients.

We should not have excessive expectations of AI.

AI does not diagnose.
It does not prescribe.
It does not take responsibility for blood tests.
If your kidneys worsen, AI will not accompany you to the hospital.

Therefore, AI must not be used as a substitute for a doctor.

However, there are things AI can do.

Organize complex medical information.
Make your symptom notes easier to read.
Summarize questions for your attending physician.
Structure articles for notes.
Create questions to facilitate discussions with people who have the same illness.

In other words, AI can become a patient's scribe, not their spokesperson.

This is modest, but significant.

For a person who is ill, recording things takes physical strength.
Thinking also takes physical strength.
Explaining things takes even more physical strength.

AI can take on a little bit of that burden.

It is not about handing over human reality to AI.
It is about using AI to reclaim human reality.

I don't need inspiring stories about illness.

People with intractable diseases are strong.
People with intractable diseases are kind.
People with intractable diseases know the meaning of life.

I don't really trust those kinds of words.

Just because you become ill doesn't mean you automatically become a noble person.
In fact, there are days when you become weaker.
There are days when you become irritable.
There are days when you envy others.
There are days when you run away from love.
There are days when working becomes a chore.

Illness is not a tool to polish one's character.
It is simply a reality that has occurred in the body.

That is precisely why what you take from it is up to you.

I don't want to turn nephrosis into an inspiring story.
I don't want to use nephrosis to get someone to pity me either.

I just don't want these 15 years of physical records to rot away within myself.

Starting from the reality within a 5-meter radius

Talking about changing society sounds grandiose.

But society usually begins within a 5-meter radius.

In the morning, I take my medicine.
I walk to the station.
I greet people at work.
I hide how I'm feeling.
I get a little sleepy during lunch break.
On the way home, I wonder if there is someone else with the same illness somewhere.
At night, I open note.

Within that small reality, there are flaws in the system.
There are voices of life that medicine alone cannot pick up.
There is a weight of the body that AI alone cannot reach.

That is why I want to gather people who have nephrosis.

Not to cure the illness.
But to record the reality of living with the illness a little more accurately.

A patient is not just a patient.
They are also a researcher who has been observing their own body for 15 years.

And research is always,

It begins with a single question.

What is it that we, who have lived in these bodies, truly know?

　　　　　　　　　　In conclusion.

“Whenever you find yourself on the side of the majority, it is time to pause and reflect.” — Mark Twain.

Mark Twain pointed out the danger of easily conforming to common sense or the majority. When looking at the world of minorities, such as those with rare diseases or the world of reading, these words resonate strongly. As a closing thought for this article, I want to convey the importance of not belittling the “small voices” of minorities and continuing to think for oneself.