Has PA decreased your quality of life?

Posted on: Fri, 06/13/2003 - 2:57pm
BS312's picture
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Joined: 09/05/2001 - 09:00

In the current issue of the journal Pediatrics there is a supplement on food allergies. One of the first statements in this publication is that food allergy "significantly decreases the quality of life" for patients and their families. Am I the only one who finds this offensive? How can they make such a blanket statement about our quality of life? I do not want our pediatrician to read this and think that somehow DD's quality of life is lower than that of a kid without PA. Her life is different because of food allergy, not worse.

Posted on: Fri, 06/13/2003 - 3:15pm
Driving Me Nutty's picture
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Joined: 05/01/2003 - 09:00

That is quite a presumption. Not to mention that quality of life is intangible and ambiguous to define.
On the other hand, I would say that my quality of life has decreased in the sense that I get 20% less sleep and have additional stress.
But I'm only 2 months new to PA also [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Fri, 06/13/2003 - 3:17pm
erik's picture
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Joined: 05/15/2001 - 09:00

My quality of life has not been diminished.
Sure - I can't eat at Thai restaurants and I have to skip many baked goods, and miss out on Snicker's, M&Ms, etc. But the alternatives (Italian restaurants, Touche/Bransons bakeries, Smarties, Aero, etc) are even better!
Plus look at the people in the rest of the world... war and famine in Africa.. war and death in the Middle East.. malaria... dengue fever... poverty...
I think my quality of life (even with a peanut allergy) is much higher than that of the majority of the world's citizens so I have no complaints. I find my peanut allergy is managable, and I have had it my entire life so it's not a big hassle at this point.

Posted on: Fri, 06/13/2003 - 10:48pm
Renee111064's picture
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Joined: 07/05/2001 - 09:00

No! Our quality of life is not different.
Everyone lives their lives differently. It is what you put into your life that counts. We are not loosing out on life. PA people experience things differently. We are more cautious because of food allergies.
Does my son miss eating steak or peanut butter? Absolutely NOT. You can't miss what you don't have. IT is up to each individual to live life to the fullest, but their quality of life is not different from anyone else!
best wishes,
Renee [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Posted on: Fri, 06/13/2003 - 11:45pm
Peg541's picture
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Joined: 12/29/2002 - 09:00

Quality of life? In a Westernized society where most everyone else can willy-nilly go anywhere and eat, touch, and breathe anything they choose? Yes our Q of life has been changed.
What we will always miss is the carefree (ness) of our life before PA.
We were walking into a restaurant after graduation last week and I realized I had DS epi pens because he did not wear them under his graduation robes. We had to go back to the car to get them. No big deal but the feeling of DS eating in a known restaurant WITHOUT his epi pens scared me to death.
Might sound selfish, we have nice cars, plenty of food and relative safety but yes
our quality of life has changed.
Peg

Posted on: Fri, 06/13/2003 - 11:58pm
erik's picture
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Joined: 05/15/2001 - 09:00

Hi Peg,
I guess I would probably respond differently, because I have had PA my entire life. I have never lived without it so this is the only life I have known. It seems normal to me to always have to be aware and careful.

Posted on: Sat, 06/14/2003 - 12:07am
Peg541's picture
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You are so right Erik and your comment about the rest of the world in poverty and disease really hits home.
You are also a shining example that all of the mothers on this list can look up to and say "Erik did it, we can too!"
Sending DS off to college in a peanut-filled world feels like a mine field to me. He's smart, he's vigilant and he's wonderfully educated and he will be fine.
I would still like a bit more carefree though.
Peg

Posted on: Sat, 06/14/2003 - 12:09am
Anonymous's picture
Anonymous (not verified)

Quote:Originally posted by BS312:
[b]food allergy "significantly decreases the quality of life" for patients and their families.[/b]
Personally, I consider pa a bump in the road. It doesn't [b]significantly[/b] decrease the quality of my life. I do think some other food allergies do.

Posted on: Sat, 06/14/2003 - 12:14am
erik's picture
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Joined: 05/15/2001 - 09:00

Quote:Originally posted by Peg541:
[b]We were walking into a restaurant after graduation last week and I realized I had DS epi pens because he did not wear them under his graduation robes. We had to go back to the car to get them. [/b]
Also, be careful about storing the epi pen in the car, especially on hot, sunny days. I had read somewhere that the epi pen should be kept away from extremely hot environments.. Unfortunately, I can't remember the exact details at this time.
My epi pen states to store it between 15C and 30C (59F to 86F)

Posted on: Sat, 06/14/2003 - 12:18am
erik's picture
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Joined: 05/15/2001 - 09:00

Quote:Originally posted by Peg541:
[b]I would still like a bit more carefree though.[/b]
Hi Peg,
Yes, I do understand the "carefree" idea. I would love to be able to eat any chocolate bar I want, eat at any restaurant I want (ie: Thai), not have to always carry around an epi-pen...
So I guess rather than my quality of life changing, I guess I would say PA is a nuisance... an extra complication I have to deal with.
I also think it is easier for someone like me who has had PA all my life. For an adult who develops PA, I think it is harder as they have to make all the life adjustments.
And yes, the fact that myself and others at PA.COM have managed PA for our entire lives is a good way to demonstrate to the mothers at PA.COM that the future for your child is promising. They can have a relatively normal and safe life as long as they always keep aware and are careful [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[This message has been edited by erik (edited June 14, 2003).]

Posted on: Sat, 06/14/2003 - 12:37am
Peg541's picture
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Joined: 12/29/2002 - 09:00

You are correct about the car Erik. Graduation was the first time in YEARS that DS did not wear his epi pens on his belt. I kept them in my purse and later left the purse in my car not wanting to drag it to the restaurant since DH was paying!
I actually carry two epi pens of my own for DS and always keep them out of high heat.
Peg

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