Thursday, January 24, 2013

Anaphylaxis- Help Us Change the World, One Word at a Time

 
Caution to my more tenderhearted or sensitive readers.  The below pictures show children experiencing severe anaphylatic reactions from food allergies. Please make sure your little ones are not looking prior to viewing (unless you as the parent choose otherwise).  These pictures are graphic and show what a reaction looks like.  SO... with all the warnings I can throw out at you to guard your hearts, please scroll down to read this post.  :)
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While these reactions were taking place, parents were petrified that they could be loosing their children.  They watch helplessly as their child's body swells, become lifeless, heavy and unable to carry their own weight.  They listen with fear to their child wheezes, coughs, and gasps for air. They refuse to accept in their minds that a simple of morsal of food can kill their baby.  Their hearts skip a beat and they die a little inside. Seconds feel like hours while waiting for help.  Their hands tremble as they grab for the epipen to administer a dose of epinephrine. This is what it is to be the parent of a child going through anaphylaxis. This is the reality and the fear that haunts you every time your child takes a bite, goes to school, or plays on the playground with other children while they are eating food.

The pictures below are likely some of the less severe reactions their child has experienced, which is why they grabbed the camera to document for their allergy and asthma doctors, or their immunologist, or pediatricians- doctor's ask this often....a picture speaks volumes of fact compared to a parent's emotional recollection. Or perhaps like me, they too took pictures to review every 15 to 30 seconds to see if the reaction was actually getting worse or if it is fear making them see each rising hive as worse.  I took pictures as a coping skill to make sure that the epipen was not needed.  This was our first anaphylatic reaction. I was ready to stick my child with the epipen, and admittedly I was feeling helpless and bordering hysterical.  My husband was not sure yet if it was needed.... we questioned everything we thought we understood.  Nothing can prepare you for seeing your child like this, nothing!  (Later, we showed the pictures to show our allergist who then told us that undoubtedly the epipen should have been used.) I kept it together emotionally on the outside for the sake of the children during the crisis.  It has been a couple years since these pictures were taken of my child.... but every time I look at them, I cry.  I do not just shed one tear- I relive the moment and feel powerless and petrified and so very fearful.... and in private I bawl.  Watching someone you love experience anaphylaxis is a trauma.  It changes you forever.

Living with children with anaphylaxis is life altering.  One moment you are a parent and a moment after their first anaphylatic reaction your world spins and instantly you are parent, nurse, advocate, researcher, investigator, therapist, educator, well-versed in the law, protector, epipen trainer and for many parents also their teacher.

The reason I am sharing so much of this very heavy and heartfelt information with you is to communicate how important it is for the world to understand anaphylaxis.  Anaphylaxis is not just life altering- it is potentially life ending.  Recently, FAAN (Food Allergy and Anaphylaxis Network) merged with FAI (Food Allergy Initiative), and they changed their name to FARE (Food Allergy Research and Education). They got rid of the word “Anaphylaxis" in their title. While I understand that "food allergies" is being utilized as an umbrella term that is supposed to encompass anaphylatic reactions, I feel strongly that it is not enough and does not sufficiently depict the life threatening state of anaphylaxis.  In my opinion, the failure to keep the word anaphylaxis undermines the progress we have slowly gained over time and impedes educating the community. Like many other parents I know dealing with children with Life Threatening Allergies, I want to see that word put back. Just one word.

My two anaphylatic children are why I  come to you, my dear readers, and ask that you please help me in our journey of keeping our children safe and sign this petition. I feel very strongly about the need to keep the word "Anaphylaxis" in the titles of the very organizations that are spreading the word to the community and fighting for changes. Knowledge is vital to make changes. Knowledge is key. Knowledge is power. In this situation, knowledge, is the difference between life and death.

 
 
 
 
 
 
 
 
Thanks Nondice Thurman for the idea and verbiage! I just posted this on my group and personal page. 

"They say a picture can mean 1000 words. Well, I only want you to think of one…Anaphylaxis. Side by side are pictures of my daughter. She is allergic to peanuts, tree nuts, and sesame seeds. This reaction was from a single bite of a pasta that contained walnuts. She is why I feel passionate about the fact that when FAAN (Food Allergy and Anaphylaxis Network) merged with FAI (Food Allergy Initiative), they changed their name to FARE (Food Allergy Research and Education). They got rid of “Anaphylaxis.” As a parent of a child who can have an ANA reaction to an allergen, it bothers me they got rid of the word. It feels like an undercut in a way. Like many other parents I know dealing with children with Life Threatening Allergies, I want to see that word put back. One word. A picture means 1000 words. I just want one." http://www.change.org/petitions/fare-the-newly-merged-faan-and-fai-organization-put-the-word-anaphylaxis-back-into-your-branded-name?utm_source=share_petition&utm_medium=url_share&utm
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This picture was taken after our littlest one placed a piece of meat with a sauce that contains eggs in it in his mouth.  He did not even swallow it.  The cook used "egg replacer" which actually contains egg whites.  
My two anaphylatic children are why I feel passionate about the fact that when FAAN (Food Allergy and Anaphylaxis Network) merged with FAI (Food Allergy Initiative), they changed their name to FARE (Food Allergy Research and Education). They got rid of the word “Anaphylaxis" in their title. As a parent of a child who can have an ANA reaction to an allergen, it bothers me they got rid of the word. In my opinion, the failure to keep the word anaphylaxis undermines the progress we have slowly gained over time and impedes educating the community. Like many other parents I know dealing with children with Life Threatening Allergies, I want to see that word put back. One word. A picture means 1000 words. I just want one."
 http://www.change.org/petitions/fare-the-newly-merged-faan-and-fai-organization-put-the-word-anaphylaxis-back-into-your-branded-name?utm_source=share_petition&utm_medium=url_share&utm_campaign=url_share_after_sign
 
 
I wanted to share with you all something I am about to post to my own page.  It is these pictures I edited to be side by side of my little girl along with the following statement along with the link to the petition:

"They say a picture can mean 1000 words.  Well, I only want you to think of one…Anaphylaxis.  Side by side are pictures of my daughter. She is allergic to pineapple.  This reaction wasn’t even from outright eating pineapple.  The picture on the left was taken only a few weeks after the picture on the right.  She is why I feel passionate about the fact that when FAAN (Food Allergy and Anaphylaxis Network) merged with FAI (Food Allergy Initiative), they changed their name to FARE (Food Allergy Research and Education).  They got rid of “Anaphylaxis.” As a parent of a child who can have an ANA reaction to an allergen, it bothers me they got rid of the word.  It feels like an undercut in a way.  Like many other parents I know dealing with children with Life Threatening Allergies, I want to see that word put back.  One word.  A picture means 1000 words.  I just want one."
http://www.change.org/petitions/fare-the-newly-merged-faan-and-fai-organization-put-the-word-anaphylaxis-back-into-your-branded-name?utm_source=share_petition&utm_medium=url_share&utm_campaign=url_share_after_sign

 All of these beautiful little faces are survivors of anaphylaxis.  Thank you God for another day to love, nuture, nurse, advocate, be a researcher and an investigator, a therapist, an educator of the community, learn more about the law, protect, train about epipens, teach, and love, love, love these children.

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