For Overlooked Adrenal Patients

They are not dying in front of our eyes.
They are not coughing themselves to death.

They are not “tragic” enough to trigger a global movement. 

They don’t attracht celebrities to stand up publicly and make big symbolic donations. 

And yet — they are suffering every single day.

People with adrenal disorders often live under a constant cloud of disease. They exist, but in a state of permanent compromise: energy rationed, stress feared, bodies unpredictable, lives quietly constrained.

For some, that cloud feels more like the Sword of Damocles — the ever-present risk of an acute, potentially lethal adrenal crisis caused by severe hormonal imbalance. A missed dose. An infection. A moment of stress. A body that cannot respond.

These diseases are known. Diagnoses exist. Endocrinologists do their best.
But the truth is uncomfortable: there are still vast blind spots, and many patients are treated today with therapies developed over half a century ago. 

Therapies that keep people alive. But, keeping them alive is about all that can be said. 

Steroid replacement - blunt, imprecise, and unforgiving.
Like using a bazooka to kill a firefly in a narrow hallway.

Homeostasis VC exists because this is not good enough.

We exist for the patients who live — but do not fully live.

Adrenal insufficiency

Hi. My name is Amy.  I’m 14 years old.

Every single day starts with a calculation. 

Every morning, before school, I take pills so my body can do something it can’t do on its own anymore: keep me alive.

If I forget them, or if I take too little, my body doesn’t know how to respond to stress.
If I take too much, my body slowly breaks down in other ways…

There is no “right” dose.
There is only guessing.

We are flying blind in this. No way to monitor, no way to keep track of the balance. 

When I wake up, I already feel tired.
Not normal tired — exhausted.
Some days it feels like my body is walking through mud while everyone else is running.

I worry about things other kids don’t have to think about.
What if I get sick?
What if I get a fever?
What if I panic before an exam?
What if I throw up and can’t keep my medication down?

If that happens and I don’t act fast, my body can crash.

My blood pressure can drop.
I can faint.
I can stop responding.
I can die.

This is called an Addisonian or adrenal crisis.
People have died from it — sometimes because they didn’t recognize the signs in time, sometimes because others didn’t take them seriously.

The medication I take keeps me alive, but it doesn’t make me feel normal.
It’s not smart.
It doesn’t adjust when I’m stressed, scared, excited, or sick — like a healthy body would.

So I’m always out of balance.

Too little hormone and I feel weak, dizzy, nauseous, scared.
Too much hormone and I gain weight, can’t sleep, feel anxious, angry, or depressed.

Doctors try to help, but even they admit it’s hard.
My body needs hormones every minute of the day — but my treatment only comes in a few doses.

It’s like trying to control the volume of music with only two buttons: too loud or too quiet.

At school, people say I “look fine.”
Teachers don’t always understand why I’m exhausted.
Friends don’t understand why I cancel plans or leave early.

They don’t see the fear.
They don’t see the calculations running through my head all day.
They don’t see the emergency injection I carry everywhere, just in case.

Some famous people lived with this. John F. Kennedy did.
What history doesn’t say is how carefully his entire life had to be managed just to survive.

I don’t want sympathy.
I want a future where staying alive doesn’t take this much effort.

There are millions of people like me.We are alive — but always balancing on the edge.

Cushing’s syndrome

Hi. My name is Noah. I am 34 years old.
And for a long time, nobody believed I was sick.

It started slowly.
I gained weight — even though I wasn’t eating more.
My face changed.
My body changed.
I stopped recognizing myself in the mirror.

People told me I was stressed.
That I should exercise more.
That I should “just try harder.”

Inside, everything felt wrong.

I was exhausted, but couldn’t sleep.
Anxious, but numb at the same time.
My muscles felt weak.
My thoughts felt heavy and slow.

My body was flooded with cortisol (the stress hormone) every single day.
It’s the hormone your body releases when you’re in danger.

Except my body thought I was in danger all the time.

I bruised easily.
My bones became fragile.
My emotions spiraled.

I felt like I was losing control of my body and my mind — and no one could tell me why.

Doctors ran tests.
They told me my results were “normal.”
They sent me home.

Years went by.

By the time someone finally said the word Cushing’s, the damage was already done.
I had osteoporosis in my thirties.
Depression I couldn’t explain.
A deep mistrust of my own body.

Treatment exists — but it’s not simple.
Surgery, radiation, medication.
Uncertainty layered on top of uncertainty.

Even when treatment works, the body doesn’t just bounce back.
Cortisol leaves scars.

People think Cushing’s is loud.
That it announces itself.

It doesn’t.

It erodes you — slowly, quietly — while you’re told you’re fine.
While you’re told it’s all in your head.
While you’re told to try harder.

From the outside, I looked like I was failing.
From the inside, my body was under constant attack.

I didn’t need motivation.
I needed answers.

There are thousands of people like me.
Living in bodies that feel unfamiliar.
Waiting years to be believed.

Cushing’s doesn’t scream.
It whispers — until it breaks you.

Salt-wasting congenital adrenal hyperplasia (CAH)

Our daughter was born on a quiet morning.
She was perfect to us immediately.

But the doctors didn’t know what to say. Boy or a girl. Ambiguous genitalia. 

Her chromosomes are XX.
She is a girl.
But because her adrenal glands produce too many androgens, her genitalia looked different at birth.

We remember the silence in the room.

We remember being put in a room without a name tag. 

We remember the letter that said ‘X’ instead of M or F
The uncertainty.
The looks exchanged between clinicians.

Nobody prepared us for that moment.

This condition is often misunderstood.
It is sometimes wrongly grouped under “intersex” or folded into broader LGBTQ narratives.

But this is not about identity.
This is about hormones.

Our daughter is female.
Fully.
Biologically.

Her body was simply flooded with the wrong hormones at the wrong time.

In many parts of the world, children like her have not been given the chance to grow up.
Girls born like this have been hidden, abandoned, sold as “freaks,” or killed out of fear, shame, or superstition.

We were lucky to live somewhere with medical care.
Even so, nothing about this was easy.

She underwent surgery when she was almost two years old.
A decision no parent should ever have to make.
A decision shaped by medicine, uncertainty, and the hope of protecting her future.

But salt-wasting CAH is not just about anatomy.

It is a constant fight for balance.

Her body cannot hold on to salt.
Salt that keeps her blood pressure stable.
Salt that keeps her heart beating.

Her body cannot produce cortisol reliably.
The hormone that helps the body survive stress.

Every single day, we calculate.

Cortisol.
Salt.
And when everything goes wrong, emerging injection, then liquids and then glucose.

A fever.
A stomach bug.
A hot day.
Things other families barely notice can turn into a medical emergency for us.

If cortisol drops too low, her body can crash.
If salt drops too low, her circulation can fail.
If both happen together, the risk is immediate and real.

We carry emergency injections everywhere.
We rehearse crisis scenarios in our heads.
We explain her condition again and again — to schools, babysitters, emergency rooms.

And still, we worry someone won’t act fast enough.

The treatments keep her alive.
For that, we are grateful.

But they are crude.
Blunt.
Decades old.

They don’t mimic how a healthy body releases hormones minute by minute.
They overshoot.
They undershoot.

Too much cortisol, and her growth is affected, her mood changes, her body pays a price.
Too little, and she is in danger.

We are constantly chasing homeostasis —
a balance that is fragile, dynamic, and exhausting to maintain.

People sometimes say we are “lucky” it’s treatable.

They don’t see the fear.
They don’t see the nights spent watching her breathe.
They don’t see the calculations that never stop.

Salt-wasting CAH doesn’t just affect a child.
It reorganizes an entire family around survival.

Our daughter is alive.
She is loved.
She is strong.

But she deserves better than a lifetime spent balancing on the edge.

‍Primary aldosteronism

Hi. My name is Sarah. I’m 38 years old.
I work in a Big 4 firm.

I’m organized.
I’m disciplined.
I perform under pressure.

So when my blood pressure kept rising, I assumed it was my fault.

Long hours.
Deadlines.
Stress.

That’s what everyone said.
That’s what I believed.

I was put on medication. Then another. Then another.
My numbers stayed high.

Severe.
Unexplained.
Relentless.

I exercised.
I ate clean.
I slept when I could.

Still, my blood pressure wouldn’t come down.

I started getting headaches that scared me.
Heart palpitations.
Muscle weakness.
Moments where I felt dizzy, disconnected — not fully present in my own body.

Doctors warned me about stroke.
About heart failure.
About kidney damage.

But no one could tell me why this was happening.

I was told it “runs in the family.”
That some people are just unlucky.

Years went by.

Eventually, someone tested my hormones.

That’s when I learned my adrenal glands were producing too much aldosterone — a hormone that tells the body to hold on to salt and dump potassium.

My body was quietly sabotaging itself.

Primary aldosteronism.

One of the most common — and most underdiagnosed — causes of severe hypertension.

Suddenly, everything made sense.
The medications that barely worked.
The exhaustion.
The fear that my body was aging faster than I was.

Treatment exists.
But like so many adrenal conditions, it’s not elegant.

Medication that blocks hormones.
Side effects that ripple through daily life.
Constant monitoring.
Constant adjustment.

I still work.
I still perform.

But now, every day includes management.

I plan around energy.
I track symptoms.
I think about my heart in a way most people my age don’t.

From the outside, I look successful.
Healthy.
In control.

What people don’t see is the damage that almost happened — simply because no one looked in the right place.

Primary aldosteronism doesn’t announce itself.
It hides behind productivity.
Behind ambition.
Behind the assumption that stress explains everything.

It took years to be believed.

I don’t want sympathy.I want earlier diagnosis.Better tools.And a future where high performers don’t have to silently fail inside their own bodies.