On Jul 30, 2007
One of the surveys had 62% of the people categorizing their food allergy as just a nuisance. Again, many people think a food allergy is an intolerance. Nobody here would say their allergy is a nuisance.
On Jul 30, 2007
Originally posted by Kathy L.: [b]One of the surveys had 62% of the people categorizing their food allergy as just a nuisance. Again, many people think a food allergy is an intolerance. Nobody here would say their allergy is a nuisance.[/b]
Yes, but I would guess many of those surveyed simply get a rash from eating, say, too many strawberries. That, I would say, is a nuisance. But the same people might respond differently if they had a history of anaphylaxis, or had at been warned of anaphylaxis as a real possibility by their doctor.
On Jul 31, 2007
Originally posted by Jimmy's mom: [b] Yes, but I would guess many of those surveyed simply get a rash from eating, say, too many strawberries. That, I would say, is a nuisance. But the same people might respond differently if they had a history of anaphylaxis, or had at been warned of anaphylaxis as a real possibility by their doctor.
I'm an adult with relatively new medically diagnosed FA. Over the years, at various times in my everyday life (not from an FA group) I've known 25+ adults with various medically diagnosed FA-- both ANA and non ANA, childhood onset and adult onset, including PN, TN, shellfish, fish MFA, etc. Some of them also have children with FA. In some cases, I wasn't even aware of their FA until they "came out" to help me when I learned of mine-- they don't talk about FA much because they no longer feel the need to. *All* of them with whom I'm still in contact told me that the early stages of adjusting are very hard, but in time, it gets better and more manageable. Almost all of them *do* currently describe their own FA as something like "a nuisance" or "no big deal" and most of them are nowhere near as interested in future treatments as I am now.
I've been FA for less than a year, so I'm not in that state of mind yet, but I'm working on it. They were right, at least in my case. I'd much rather not have FA. I know what I'm missing. But it's easier now than it was at first. So I understand and am not shocked by the survey results. I think it's mostly about differing comfort zones. Some doctors are also more conservative than others.
Most of these adults I know with FA have had their FA for a long time. They've gotten very good at taking precautions and avoiding their allergens. They know what works and doesn't work for them. Many of them have not had reactions in years. One person I know with a spouse with FA has *never* seen a reaction in the several years they've been together. Sure, those whose past reactions have been ANA or have it in their family history are generally more careful than most. But those of us whose FA are, knock wood, not ANA and our doctors are not necessarily ignorant of the risk that we might suddenly become ANA some day. (We hope not.) It's true that some people don't know, so FA education is important, but for some of us, we base our individual decisions on our own history, needs, preferences, lifestyle, medical advice from our own doctors and other trusted sources just like any other major life choice. There are lots of risks in life to balance, and for many adults with FA, FA isn't necessarily the primary one *for them*. After continuously freaking out 24/7 for several months, I finally heard what 2 doctors and several adults with FA were saying to me and realized that *for me* to cope effectively, I need to be cautious but low key and not worry constantly about every possible risk of FA.
Yes, some of us adults would probably adjust our comfort zones if our reactions were worse or more frequent, and we might make different choices for a child than we do for ourselves. Right now, I am more cautious than most of the adults I know with FA, and less cautious than most of the parents on this board. That's ok. We each do what we feel is best for our own situations. There are still many unknowns and conflicting information in regard to FA. There are differences of opinion, even among doctors. So the survey results may, in some cases, reflect ignorance of FA, but in other cases, informed, conscious choices and feelings about their FA that may or may not be the same as what others choose or feel.
(relatively recent adult onset non-ANA TNA/inconclusive PA)
On Jul 31, 2007
I understand that it can be categorized as a nuisance as far having to deal with it. That might how I would categorize living with DS's PA. But the choices were "life threatening," "very serious," "a nuisance, but not too serious," and "no bother." That sounds to me like the severity of the allergy being rated, not how difficult it is to manage it.
On Jul 31, 2007
Originally posted by Jimmy's mom: [b]But the choices were "life threatening," "very serious," "a nuisance, but not too serious," and "no bother." That sounds to me like the severity of the allergy being rated, not how difficult it is to manage it.
You're probably right. I can only speak from my own experience, and I don't know if there is a breakdown of percentages in each severity category that might correspond to that survey more scientifically. But I was told by 2 doctors in completely different locations, one with decades of clinical experience, and the other trained in the last few years, that the majority of FA are not life threatening and PA and TNA, somewhat more likely to be, but still a small percentage overall. Of course, that's not much comfort if you or your child or other loved one happens to be in that minority. Though I'm not, I do relate, since I'm in the apparently very small minority of adult-onset. But my point is we really don't know why the people surveyed answered why they did and we can't automatically conclude that it's either accurate or inaccurate on that basis. It's only one survey reported through the filter of one newspaper article.
Some probably *are* calling an intolerance an allergy. Some probably *do* have doctors who gave them bad advice. Some probably *are* taking more risks than they should, but based on the other adults with FA that I know and myself, I think it's entirely possible that many really do have mild or moderate true FA, and that percentage may be higher than some people here may think. If their FA isn't severe, if they manage well for a long time with a fairly broad comfort zone, then most of them spend less time with doctors, are less interested in clinical trials, are much less likely to join FA groups or post on boards like these. So the organized FA community and researchers are probably less aware of them and more aware of those on the serious LT/ANA end of the spectrum, and respond accordingly. Maybe I'm wrong, but it makes sense to me.
------------------ (relatively recent adult onset non-ANA TNA/inconclusive PA)
[This message has been edited by journstep (edited August 01, 2007).]
On Aug 1, 2007
Okay--more people ask about food prep when eating out to avoid xc (because they recognize their allergy is serious) than carry Epis?!???
Don't get me wrong: they should definitely ask. But then why aren't these folks carrying Epis?
You would not believe the number of shellfish allergic adults (adult onset typically) that I run into who don't carry an Epi. They tend to say that they can control thing by simply avoiding a blatant form of the food.
It drives me crazy.
Those are the people I tell about Benadryl strips so perhaps they will carry them in their wallet in case they have a reaction, not that it's a substitue for an Epi (I only do this after telling them they should carry an Epi).
On Aug 4, 2007
I was at a kid's party recently and met another mom with PA daughter who was also at the party. The mom seemed genuinely impressed that I carry an epi pen in my purse along with benadryl liquid (and strips)! She just seemed like it was too much of a hassle to carry that around with her. I couldn't believe it. Especially going to a party with all sorts of foods you didn't prepare. Luckily it was at my niece's and my SIL made sure that everything was safe for my daughter (and I'm very strict about what I'll let her eat).
On Aug 5, 2007
Yes, I know 2 FA adults (one is shellfish, another is MFA) who have Epis but never bring them along when they leave home. Both have experienced the sensation of throat closing but haven't gone to the ER. They just guess the contents of their food as well as they can when they go out to eat. Seriously, people do not get a good education from their Drs., and so many people WANT to believe it's only a nuisance. And even though they actually have diagnosed FAs, they don't want to listen to me when I tell them that their allergy could be dangerous. I don't say much, because it's their business.