Research

9 replies [Last post]
By doofusclo on Thu, 03-08-07, 03:26

I would like to know what those of you with adult on set PA and tree nut think of the research they are doing for food allergies now. Do you find hope in it or are you resigned to living with your allergies? What do you find hopeful? Zolair or the building up of a tolerance or whatever else is out there?
Thanks Cindy (DD has MFA)

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Cindy O

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By doofusclo on Thu, 03-08-07, 18:57

Thanks that is kind of what I expected. I would like them to find an answer for everyone. I pray about it and support the research, but I also try to get my three year old to understand the gravity of this situation that she might have for a life time.
Thanks again. Cindy

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Cindy O

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By Adele on Thu, 03-08-07, 22:03

My sister has a friend her age (almost 60) with a peanut allergy. The friend's PA used to be much worse until she participated in a research program. I can't remember the name now - but when my sister told me about it, I found reference to the company here on PA.com.

My sister's friend went from being extremely sensitive to mildly sensitive. She said that now, she could eat a Snickers bar, but doesn't. She still avoids peanuts.

If there was something available like this for me, you can bet I would volunteer. I would like my peanut tolerance level raised so I don't have to worry about an accidental ingestion.

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By Adele on Fri, 03-09-07, 01:42

The research study that my sister's friend participated in was at the National Jewish Hospital in Denver. I don't remember the name of the drug but the company manufacturing it either went out of business or took it off the market. I think it was pre-Xolair - possibly Tanox?

I believe she participated in this study in 2000.

[This message has been edited by Adele (edited March 08, 2007).]

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By McCobbre on Fri, 03-09-07, 05:40

I have other adult onset LTFA--shellfish and sesame--and I do find hope. I'm very excited about the immunological research going on that was reported about a year and a half ago. I'm about to start taking Xolair. It's for asthma, yes, but you better believe I have strong hope that I won't have the airborne reactions I do now. I hope that I can eat grilled food at a restaurant again.

If there's hope out there in research, why not claim it for myself?

[This message has been edited by McCobbre (edited March 09, 2007).]

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By ajgauthier on Fri, 03-09-07, 05:58

I'm ok being PA...and I'll be ok with it if there never is a cure or something to make me less sensitive to traces.

It'd be nice though, to have something (drug or desensitization method) that would make me less sensitive to traces. Knowing that I could have a tolerance for say, a smidge of peanut, means I could eat out anywhere I wanted without worry of cross-x, could eat bakery items, could eat at other's houses freely and without concern.

That'd be the big change for me...more peace of mind when eating out and trying new foods.

So, I guess I have hope, but I'm not counting on it.

Adrienne

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30-something survivor of severe peanut/tree nut allergy

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***retired from pa.com***

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By doofusclo on Sat, 03-10-07, 21:15

Thanks again for your replies. Since my daughter has food allergies I have kind of decided that is what my charity/research money will go too. I want a better solution then Epi pens for all people with food allergies. I want everyone to be able to go out to eat and not have to worry about cross contamination. The fact that adults with PA still have hope of a better solution gives me more hope. Thanks again, Cindy

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Cindy O

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By journstep on Mon, 08-06-07, 18:12

I know this is an old topic and the original poster may or may not be reading, but I'm replying anyway because I'm new to posting.

I am adult-onset, and I do have hope for research, or at least I try to. I have been around the block with similar but non-FA issues for a long time, so I don't believe it will be quite as soon as some sources portray. On the other hand, even though my allergy is not ANA, we all have to avoid allergens and manage things more or less the same way. I'm old enough that I may not ever see viable treatment, and young enough that I may still be living with FA for a long rest of my life. I don't like to think of that idea.

But I have been FA for less than a year. I know from other life experiences that later on, it may not be as important to me as it is now. I know most of my adult friends and colleagues who have lived with FA longer don't think about research much and would probably not seek treatment if there were one. I respect and understand that because I've lived my entire life with something covered under the ADA that is permanent, visible, not "curable" and I neither expect one to come along in the next several generations, nor would I ever want one, as the way I am is part of me. If I must have FA for the rest of my life, I will try to continue to live a productive, happy life of dignity as an adult with FA. But given the other issues and complications already in my life, I'd prefer not to have FA too.

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(relatively recent adult onset non-ANA TNA/inconclusive PA)

[This message has been edited by journstep (edited August 06, 2007).]

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(relatively recent adult onset non-ANA TNA/inconclusive PA)

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By VariegatedRB on Thu, 08-09-07, 12:42

(quote edited out by office)

I don't think so, because most of the options I have read about still require the person to avoid peanut, it just eliminates that fear of an accidental or cross-contamination reaction.

Tara P

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Tara P

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By Moni on Sun, 08-12-07, 10:35

Yes I hope they find it, not just for myself, but for the children who have their whole lives with PA ahead of them(and their parents).

I myself would participate if it meant it would decrease the severity of a reaction even slightly, even if it only meant the airbourne and trace reaction was removed and I had to actually ingest a peanut to have an anaphylactic reaction.
I have had PA for as long as I remember so I am that programmed to avoid all nuts that I still don't think I would ever eat a peanut on purpose. But would really love to have that comfort there that if I ever did have something with peanuts in it that my reaction would not be as severe and would not endanger my life. As hideous as they are, I'd be happy to just have a few hives if I ate a peanut, if they can substancially reduce my risk of having an anaphylactic reaction I would definately be involved.

Moni

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LIVING WITH PEANUT ALLERGY FOR 30+ YEARS

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LIVING WITH PEANUT ALLERGY FOR 30+ YEARS

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