“My Kryptonite” by Susan

Susan has shared her story and what OIT has meant to her in an emotional video titled “My Kryptonite”

My Kryptonite
By Susan Tatelli

I couldn’t fly on a plane
I couldn’t go to the movies
I couldn’t eat out
I couldn’t eat birthday cake
I couldn’t go to ice cream shops
I couldn’t sleep over
I couldn’t sit where I wanted at lunch
I      couldn’t       live       a        normal        life…
because a microscopic amount of peanut once had the power to kill me

That was my life — anything but normal… for years

Until OIT
Eating ever increasing amounts of peanut, my death sentence
I was in a Phase 1 clinical trial called PRROTECT.
They didn’t know much…a Phase 1 clinical trial is one giant experiment…
Some science
Some art
Some guesswork
Nothing… certain

They said the trial would take 9-12 months for most.
For me, 18.
There is no cure.
For some, OIT offers hope, protection, a form of treatment, a normal life

The nothing drug
was the control
got Saline, not Xolair
Three lloonngg ssssllloooowww injections every other week, for months
of nothing
The chances of getting Xolair were high
I was one of the two out of nine who got the placebo
Not getting the Xolair made the trial 1,000 times harder

But someone had to be the control
And I believe it was me for a reason

I had six epinephrine-requiring anaphylactic reactions during those 18 months…
And that’s not even counting the other reactions I had…
The doctors and nurses didn’t believe my reactions could be so delayed…
sometimes up to 24 hours…
But…now they know.

Flushing Skin
Feeling Hot,
Swelling of mouth, lips, tongue, throat
Difficulty breathing
A feeling of doom
Loss of consciousness…

38 people will have had an allergic reaction and 1 will have been
treated in the emergency room by the time I am done reading this

I self-administered my EpiPen five times during the clinical trial
I remember the first time
I was 11
I remember how late it was
I remember the kickback
I remember the unexpected force
I remember knowing the needle had not been in long enough
I remember trying to stick that same EpiPen back in
I remember the blood pouring down my leg — like a river
I remember having to try again
I remember being ready, SO READY the second time
I remember holding the needle in my thigh, even as it tried to push back out
I remember there was no blood when I did it right

When I had my reactions at the beginning of the trial I wasn’t
confident in knowing what to do
I made mistakes, but I have learned
I have perfected my technique
I know the best and  least painful way to self inject
(not that it hurts much anyway)
Now, when I have reactions my first thought is “Ohhhh great another reaction”

I eat a peanut dose every morning.
I eat a peanut dose every night.
Sometimes, I have random unexpected reactions.
Anaphylaxis to peanut — my friend, my  enemy, my kryptonite
But I’m not scared or worried
I know what to do, and I will do it.

People ask me why I didn’t quit.
People tell me I should have quit.
People ask me why I kept eating something I knew could kill me.
People tell me I should stop eating peanut.
People do not understand what it is like to not be able to live a normal life.
People ask me if I was afraid.

I tell people that I never wanted to quit
I tell people that all I saw was my end goal:
To live a normal life.
To be able to go places,
Fly on a plane, to the movies, to other people’s houses

I tell people that I never wanted to quit
I tell people that all I saw was my end goal:
To live a normal life.
To eat cross-contact things,
Ice cream, M & Ms, donuts, Indian, Greek…everything
(DO YOU KNOW — there is a COOKIE inside every Twix Bar?!)

I tell people that I never wanted to quit
I tell people that all I saw was my end goal:
To live a normal life

I tell them that I wasn’t scared to have another reaction
Because now I know exactly what to do

The goal of the clinical trial was for me to be able to eat 17 peanuts
— at once!
I didn’t reach the goal
Not even halfway
But I didn’t quit
I started seeing a doctor who specializes in OIT
She reduced my dose
She changed my meds
She added vitamins
And applesauce!
(Who knew?)

I was cleared to eat cross-contact foods the day before my birthday
It was the best birthday gift I will ever get

On February 1st I passed a 24 peanut challenge
(remember when I couldn’t be NEAR peanuts?!?!)
Do you know how much peanut 24 peanuts is?
That’s THREE Reese’s Peanut Butter cups.
The BIG ones.

It took me two years to get there
But I had lots of help from my two new friends:
And Epinephrine

Even knowing what I know now, I would still do it again

It was all worth it

Because now I can fly on a plane

I can go to the movies

I can eat out

I can eat birthday cake

I can go to ice cream shops

I can sleepover

I can sit ANYWHERE at lunch

My Friend,
My Enemy,
My Kryptonite

in Videos

Site created by Food Allergy Parents like YOU ! … They said there were NO TREATMENTS for food allergy!