Peanut allergy cure

Dying for a Peanut Allergy Cure

peanut allergy cure

Living with a deadly allergy is a life of anxiety, fear, avoidance, and constant, constant vigilance. I read ingredient labels, I constantly scan the environment, I don’t eat out at restaurants with peanuts on the menu or in the kitchen. This allergy affects every aspect of my life, all day, every day. I am willing to do anything to help find a peanut allergy cure. Anything. And it almost cost me my life. I told the medical team that worked so hard to keep me alive, that my only regret was that I had only one life to give to eradicate peanut allergy.

This blog post was originally written in August of 2016

After an entire life of strict avoidance, I intentionally ate applesauce laced with peanut protein for the first time ever. I did it for science. I did it to help find a treatment, and maybe eventually a peanut allergy cure.

I consumed 44 milligrams of peanut protein. This is the equivalent of a little less than an eighth of a peanut. I became violently ill and went into anaphylactic shock. Had I not been in the hospital, I probably would have died. I vomited. I had diarrhea. My skin turned beat red and my entire body burned from the inside. I basically had Ebola for three hours.

The good doctors and nurses emptied their entire arsenal of emergency medication into my muscles and veins and managed to reverse the severe reaction.

I had come back from the brink of death again.

I recently enrolled in the Palisade Trial to investigate an experimental treatment for peanut allergies.

My peanut allergy is ridiculous, brutal, stigmatizing, and horrific. I blog about it. Obviously. It is terrifying to navigate this nutty world, avoiding peanuts, trying not to die. I wanted to do more than write, vent, and complain. I enlisted in the battle. This is my fight. I faced my greatest fear in order to help science figure out how to treat and cure this disease.

I printed out a piece of paper and took it with me to the hospital. It had photos of nine young, and beautiful people. All of them are dead. They died from accidentally eating peanuts. Fuck this awful disease. Nobody should die because they got hungry and ate the wrong food. Nobody should have to live like this, either. I was no longer accepting things I could not change. I was willing to make the ultimate sacrifice to change the thing I cannot accept.

I wear an invisible badge of honor: I survived last Monday. I faced death, and I lived to see another day.

I was standing in line at the store yesterday. The line moved so slowly. The people in the line were stressed. It was very hot. I looked at the people. I saw the cashiers ringing up items. I noticed the managers standing around talking. After overcoming death, the business of life goes on. Nobody saw my invisible badge, but it was there. I savored and appreciated the moment and felt compassion for everybody in that whole store. I bought a casual pair of stylish dark gray pants.

I did all of my laundry at the laundromat Wednesday. I went to the store and bought detergent beforehand. The clerk was tall and had interesting glasses. I fed my kitty cat today, then I cleaned his box. The boring, tedious, mundane chores are sweeter. Life’s more precious to my heart this week than it was last. This is a real gift. Slowly this state of mind will dissolve and I’ll take everything for granted again, but I’m enjoying my moments. After having a near deadly allergic reaction, I deeply realize that every moment is a second chance.

This week, I’ve been less frustrated and angry. I’ve had a more positive attitude. It’s been good. My body is healing from the massive inflammation, and the steroids have made sleeping a struggle, but healing is happening.

The excruciating pain of an anaphylactic allergic reaction is almost indescribable. My palms, the entire surface of my body itched. My skin swelled up with welts all over my body. I turned red. I felt my body burning. I felt my throat swell up. That was exceptionally terrifying. I felt two injections of epinephrine, one in each arm. They didn’t feel like anything, tiny little drops on an agonizing sea of fiery pain. I tasted the crystalline salty ice of the saline solution the nurse injected into my veins on the roof of my mouth. The medicine affected my perception. I lost track of what was happening, lost track of conversations, I was so sick, and confused. I remember drinking ice water. It was nice and soothing to drink while my body felt that it was on fire. I remember the nurses going with me when I had to go to the bathroom. I was very happy about that. I remember getting up out of the hospital bed and wanting to run away from the pain. But I was trapped in this swollen, red, reactive body. And then I had a panic attack. Or maybe it was the anaphylaxis affecting my consciousness with a sense of impending doom. I think that I suffered the most during this panic attack. Fear. Terror. Blind panic. Looking down at my hands, I saw that my fingers were swollen like sausages and I became overwhelmed with dread and anxiety greater than that I have ever known. My ring would not come off my finger. I was trapped in metal, being measured by instruments, and the medical team kept pumping more and more medicine in my IV. I was initially very disappointed in myself, for letting fear take over. The compassionate nurse iced my swollen fingers, and tried to keep me calm. I was very grateful that she was there helping me. On reflection, maybe the panic attack was my brain’s way of squirting out more epinephrine to help reverse the reaction. My face was red hot. My neck and back boiled. Red welts covered my legs. My asthma flared up and it was a struggle to breathe. I took a couple of nebulizer treatments.

And then slowly, the the medication subdued the reaction. The allergic reaction subsided. The welts started disappearing. The redness drained from my skin. The fire burned itself out. I started to feel a little better. Life goes on.

I won that battle. I emerged victorious. I did the thing that I fear the most.

Tomorrow, I have another food challenge. I eat more peanut protein. It’s cool. I got this. I have emerged from this experience with a deep intuitive knowledge: I already went through the worst case scenario: eating peanut protein and violently going into anaphylactic shock. I tackled it, and I nailed it. Even if the worst case scenario happens again, I dealt with it once. My medical team and I can do that again if we had to.

We won this battle. We are poised and ready to win the war.

Science has NOT cured Peanut Allergies!

When I tell people about my severe peanut allergy, I come across a lot of people who tell me about they’ve already found a peanut allergy cure.

People have been reading the headlines about peanut allergy studies. In reality peanut allergies have NOT been cured. Really. There is no cure for peanut allergies at this time. The recent studies describe a few hundred children in clinical trials that have been temporarily desensitized to small amounts of the peanut protein -for now, so far.  But in post-pubescent adults?  There are no promising studies, and no cure, in science, at this time.  But there is always hope.  That is the sucky reality of a person like me.

I have signed up for every research study about peanut allergies I see.

I was almost a research study participant, but I was kicked out of the study for being too allergic and too asthmatic.

If I do find hope for someone as allergic as I am, I will blog about it, I will tell you when I see you in person, I will Tweet it, I will yell and sing about it, trust me, you will know.

Why do articles constantly print this nonsense, that ‘peanut allergies have been cured?’  People read about the promising results of experiments and studies and think the results apply to everyone with the affliction.

Case in point: a recent article:

My rebuttal to this click-bait bogus fake news:

How can you say ‘peanut allergies have been cured?’  What about the minority of children in this group that weren’t cured?  This is a misleading thing to tell readers, most of whom are science enthusiasts, and some of whom work in the restaurant industry.

In my opinion this is a downright dangerous and offensive thing to say in a media publication.  Someone is going to read this article, who works in a restaurant, and then assume peanut allergy is not a problem anymore, and then not take people’s allergies seriously.  And when someone’s allergies are not taken seriously by people who work in restaurants, that person’s life is in danger.  Here is a link in which a peanut allergic person died after eating food from a restaurant:

My message to people who write this sensational fake news:  Knock it off.  Don’t publish headlines touting a “cure” unless a cure to peanut allergies is actually found that works for all individuals, children and adults, stricken with this affliction.

 Every time I take a bite of food, my life is in danger.  I could die.  If the bite of food I eat has peanut protein, I could die in as little as 90 seconds.  This is not a condition to take lightly, nor is it fun.  This is a serious issue and a big deal.  Please refrain from these sensational headlines that could jeopardize people’s lives.

Thank you