My name is Nora. I have a very rare genetic condition. When I tell you what it is, you might find it appealing. You might even wish you had it. But once you hear …
Hi guys!
My name is Nora.
I have a very rare genetic condition.
When I tell you what it is,
you might find it appealing.
You might even wish you had it,
But once you hear the whole story,
you'll know that it's not
something to wish for.
That's because reaching
my age with this condition
is considered unusually successful.
The formal name of my condition is
"congenital insensitivity to pain".
It means that I don't
feel pain.
I don't feel any aches either.
For example, if someone stands
on my foot, I won't feel it.
It doesn't hurt if you stick a needle in my arm.
I never get headaches.
It doesn't hurt if I accidentally
cut myself while making food.
When you hear all this, it sounds like
a superpower, but it really isn't like that.
Pain and aches are vital for our health.
Let me tell you about something
that happened last year.
One evening, I got out of the shower.
I realized my skin was all red
when I was drying my hair.
It turns out that the water was
too hot when I was showering.
I didn't notice it because
I didn't feel any pain.
I had second-degree burns
on my back, my arms, my neck.
The next day, I had blisters everywhere.
If I could feel pain
I would have felt that the water was
too hot, and I wouldn't have been burned.
As you can see, feeling pain
helps us protect ourselves.
We are too vulnerable without it.
This is a bit embarrassing, but let me
tell you something interesting.
I can't feel it when I have to pee,
so I always go to the bathroom
at the same time every day.
My body is used to it now.
If I don't follow the schedule,
I don't feel anything even
when my bladder is about to burst.
I can only tell when I start peeing myself.
So I set alarms to remind myself
to go to the bathroom.
I know it's a bit gross, but I wanted
to make sure you understand my situation.
So if I don't know when I need to pee,
does that mean I don't feel hunger.
Luckily, that's not a problem.
Hunger and feeling full is controlled
by a different mechanism in the body .
So I can feel it when I'm hungry,
or when I get full I'm eating.
I feel especially lucky
that I can feel fullness.
Otherwise, I would eat all the time,
and gain too much weight.
A problem I might have in the future
is about giving birth.
Women can tell that they're about
to give birth because of the pain they feel.
As you can guess, people like me
don't feel such pain either.
That might sound good to you as well.
What more do you want?
You can give birth without pain,
you might say.
However, a mother has to push
in order to give birth,
But if you can't feel labor pain
from the contractions,
you don't know that you need to push.
So I probably won't be able
to give birth naturally.
I'll have to give birth with a c-section.
That's the future though.
I actually want to talk more about
what I'm going through now.
You know what, the most common
problem I have in my daily life is,
biting the inside of my cheek when eating.
You don't do it as often as I do,
because you know that it will hurt
based on your past experiences.
I've never felt pain so I don't
have that experience.
That's why I often bite my cheek
or tongue when eating.
Sometimes I end up with
a mouthful of blood.
So I have to stop eating and
wash my mouth.
That's actually how I was diagnosed.
When my teeth first came out
I started eating my tongue.
I kept biting it so my mouth
was always filled with blood.
When my mom told the doctor,
he said this wasn't normal at all.
They didn't know what was wrong at first
because it's such a rare condition.
Then they ran some tests.
They figured it out when they realized
that I don't feel pain.
My mom always says that for her
the hardest part was when I was a baby.
For example, I would be
taking an afternoon nap,
Then my mom would see that
my eyes were all purple when I woke up.
Turns out I was pressing too hard
when rubbing my eyes.
I still have a lot of problems today,
but at least my parents
don't have to deal with it.
So many things happened
when I was in primary school.
You're too young to protect
yourself at that age.
For example, I really wanted to skate.
I begged her, but of course
my mom didn't get me rollerblades.
So one day I borrowed my friends
rollerblades, and went skating.
When I came home my left arm
was hanging really low.
I had fallen on it when I was skating.
I didn't feel any pain so I didn't know
that it was broken.
So I kept on skating as
if nothing had happened.
And fell on it a second time!
If I remember correctly
I broke my arm in six places.
Usually it takes one month
for a broken bone to healing kids,
but I had to wear a cast for four months.
Around that age another
crazy thing happened.
I always used to have bruises
all over my body,
and the bandage on my arm, my leg,
and even my head.
One of the neighbors noticed this.
She watched me for a while.
She thought that there must be violence
in my home for me to have so many bruises,
and called the cops.
Two social workers came to our home.
My parents showed the doctor's report,
so everything was okay.
It's kind of tragic but we laugh about it
whenever we talk about it.
I've mentioned all the downsides.
Are there any benefits to not feeling pain?
Maybe, but I've never explored them.
Remember when it was super trendy to eat
the world's spiciest pepper on YouTube.
Those videos got millions of views.
People made a lot of money like this.
If I wanted to, I could have eaten
the spiciest pepper in the galaxy.
I could have been a guest on a YouTube channel
without telling anyone about my condition.
I could have even started my own channel
after I got famous as a guest.
I would have made a ton of money.
Just joking. :)
Don't let this video fool you.
I don't really like being
in front of the camera.
Anyway I don't want to make money out of
something that makes my life really hard.
I read somewhere that a guy in India,
makes a living because of this condition.
He performs on the streets.
Sticking skewers in his body.
walking on fire,
and letting cars drive over his feet.
Even though he doesn't feel pain,
these are all really risky.
He could easily harm himself.
People like me live lives of danger.
Why make it more dangerous
with stunts like this?
Unfortunately people with my condition
have a short lifespan.
I’ve already told you so many things,
so now you’re aware of it too.
At anytime, I could go through
any one of hundreds of issues.
Like a heart attack.
Heart attacks have some signs.
if you feel chest pain, you know that
you need to go to a hospital straight away.
So the doctors can intervene
before you have a heart attack.
I wouldn't be able to do that.
I wouldn't feel any chest pain,
so I would only know that I was
having a heart attack
once it actually began.
But there is one thing about my condition
that I am grateful for.
I don't have to go through period pains.
My mom has terrible period pains.
Her pains begin days before her period,
and they continue for days.
If I could feel pain, I'm pretty sure
I'd suffer like my mom.
Thankfully I don't have
to worry about that.
The other thing that I really like is that,
I don't ever get itchy.
Some people with this condition
don’t feel itchiness either.
I'm one of those people.
I have never scratched an itch to this day.
No matter how many mosquitoes bite me.
I don't itch!
Even if the bitten area gets red or swollen
I never feel like scratching it.
It's funny though because
mosquitoes love me.
If there are ten people in a room,
I am the one they'll bite.
If I could feel itching,
then I’d be in big trouble.
I guess this is how the negative parts
kind of get balanced.
The more I tell you about
the advantages of my condition,
the more I remember.
Like I don't sweat
even when it's really hot.
What does it have to do with pain
you might wonder?
You are right!
But for some reason
people with this condition don't sweat.
So I don't have to think if I smell bad.
I've never spent money on deodorant
in my life.
My doctor has been following
my condition for years now.
One day he said,
"The only pain you'll ever
go through is heartbreak".
But I haven't fallen in love yet.
I know it's really stupid,
but I dream of falling in love with someone,
and I want that person to leave me.
So that I can experience heartbreak
like my doctor said.
I've read about it online,
and many people say that heartbreak
feels like physical pain.
This is the only chance
I have to experience pain.
Who knows,
maybe I will eventually experience it.
Lastly I must talk about this:
Is there a cure for this condition?
Sadly no. :(
But we do know the reasons and
circumstances under which it’s seen.
So it might be possible to find a cure.
However, only a few people
in the world have the condition.
The exact number isn't known,
but it's probably less than 500.
For pharmaceutical companies
fewer patients means less money.
So nobody puts aside financial resources
to find the cure.
You know, the cure to many conditions is
found through scientific research.
It takes years for that research
to become medicine.
Maybe they'll find something in the future
but there's nothing now.
Thank you for listening to me.
Now you know my entire story.
Now tell me.
Would you like to be in my position?
Please tell me in the comments
what you think.
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