Adult Experiences with FA organizations

5 replies [Last post]
By journstep on Mon, 07-30-07, 15:44

I'm curious what other adults' (both early onset and late onset FA) experiences with and opinions of the various FA organizations are. Do any of them have a large number of FA adults involved, or make consistent efforts to include adult concerns or at least ones that are not exclusively parent-child related, use adult-inclusive language in their materials, etc?

I get that most/all? of the major organizations were founded by parents, and that a higher percentage of children than adults have FA. I get that from a publicity/media POV it's more compelling to focus on kids with LT/ANA FA than adults. But for adults and adult onset, in my experience, it's harder than it needs to be because there seems to be so little out there, and if you're fortunately, knock wood, not ANA so far, you're *really* not on the radar. For me, the early months were confusing and scary enough, even with the help of several adult friends and coworkers with FA or with adult FA relatives. If I hadn't been lucky enough to know people and actually had nowhere to turn but an FA organization,it would have been much, much harder.

I have a feeling that percentages of adults with FA are skewed low and toward more severe cases in the few research studies because most of the adults with FA I know have had FA long enough that they don't join FA groups, don't spend a lot of time with doctors or wondering about clinical trials, or even thinking about FA that much. They just deal, which I'm getting better at doing. But if there were more out there directly relevant to adults, I think some of them would be a lot more likely to step up to support the FA community's efforts to everybody's benefit. Am I missing something here?

(on-off lurker, first time poster with relatively recent adult onset non-ANA TNA/inconclusive PA)

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

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By Adele on Wed, 08-01-07, 01:45

Hi journstep,
Welcome. I also have adult-onset PA. I was diagnosed about 2 1/2 years ago. I haven't found any adult FA groups - but have been lurking and posting here since diagnosis.

Even though the majority of the members here are parents of PA kids, most of the members have been supportive and have answered any questions I've had. There is also a small group of adults that post here regularly.
It's good to read your posts - I appreciate any info you can contribute!

Thanks!
Adele

[This message has been edited by Adele (edited July 31, 2007).]

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By McCobbre on Wed, 08-01-07, 03:36

Hi there! I have a child with PA and in the last two years I developed FA myself--shellfish and sesame (had ana to chamomile a few years earlier). I was already a member of this board when I developed my allergies and have found it a supportive place.

I do not belong to any FA groups. I don't have the time, but in my situation if I had time it would be to a PA group (I belonged to one when we lived in another community and you're right--the focus is on children).

I tend to get the support I need with my FA from this group even though the focus is PA.

My experience with adults with FA (and this tends to be shellfish--that's what I encounter mostly) is that they aren't that concerned. They tend to dismiss their allergy IMO. I am concerned about cross contamination (and I've had an ana reaction from xc); they tend to say that as long as they don't ingest their allergy blatently they're okay.

I'd rather spend my emotional energy and time w/r to my own FA here where I know folks get it. I come here for my PA DS, but my own sense of how to deal with my FAs are nurtured here.

There are a number of adults with PA on this board. For some it was adult onset but it's been lifelone for others. When people the latter group write about how they've dealt with it, how they've reached certain milestones, it's so encouraging to me as a parent. And I'll share their stories with my DS. So I really value those posts--and any for adults with FA.

I hope what you find here can help fill some of your need for info and support.

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My posts may not be published by anyone without getting express written consent by me.

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By journstep on Thu, 08-02-07, 17:55

Thanks, Adele and McCobbre, for the welcome and your comments. If anyone else who is reading has insights on the subject, please post as well.

Although I just registered and began posting a few days ago, I've been reading on and off for several months and some of the information here has been helpful. The first few months after I became TNA/possibly PA, were very overwhelming, and some days are better than others now, but I've figured out my comfort zone, I have some FA adult peers in my everyday life, and I'm coping for now. So my interest in this board and in FA organizations in general is not so much a support group but as information sources for TNA/PA related products and merchants, what's going on with awareness and public policy, medical research, etc. The other people in my life with FA don't generally have interest in that. I'm not necessarily looking for an adult-only organization (which doesn't seem to exist), and I don't have time or energy to start one. But ideally, I would feel most comfortable being connected to and supporting an FA organization that is actively welcoming of parents or other family members or friends of people with FA *and* adults, whether the FA is mild, moderate, serious or life threatening. I totally respect parents' needs and concerns around school/camp and other child-oriented issues, as well as the needs and concerns of those of you who are or who have children who are ANA or at high risk of such, but those aren't my needs, and in my experience, that's mostly what FA organizations/FA websites' materials seem to discuss, and most of it tends to be worded, "Your child..." When I contacted them early on, most seemed uninterested (didn't even reply to my messages) or were polite but didn't quite seem to know what to do with a newly diagnosed adult whose FA is not ANA. It's off-putting. I hope at least some adults on this board will tell me that they've had better experiences.

Because of other circumstances in my life, from a very young age, I've been involved personally and professionally in advocacy, peer mentoring and things like that. So in asking these questions, I'm also thinking about the bigger picture. I totally relate to and appreciate, McCobbre, what you and some other parents say about sharing the adults' experience with your children. It's so important for people who been there to guide those who come after, and to have roles in shaping the issues that affect them. Some parents here already have teens or young adults with PA, and many of you with younger children now will eventually have adult children with PA, who will need to make their own way in the world and want to speak for themselves from their own perspective. If FA organizations are not (apparently-- again, I hope somebody can direct me if my impressions are wrong and there are adult-inclusive ones) venues where a large number of adults feel welcome and relevant, where are those role models going to come from? If these organizations are the ones that influence the media, public policy, research priorities, and most of the experience comes from parents and those whose FA are very serious, it seems, in my opinion, that's not representative of the range of experiences and may not be good for all people with FA in the long run. The general public, including new families with FA will continue to be terrified and emotionally paralyzed, as I was for several months despite doctors and other FA adults telling me otherwise, that *all* FA are equally ANA/LT, that there are almost no adults with FA, let alone adult onset, that the rare adult onset FA is almost always severe and never goes away (something I've read in the few studies I can find, but that, from talking to many people with FA, I've found, may or may not be true.) If most allergists are pediatric ones, where are all the kids with FA going to get care when they grow up?

I'm not trying to be argumentative, but I'm sure I'm not the first person some of these thoughts have occurred to. I'm honestly and with all good intentions, interested in knowing if there are any good ways in which adults with FA, including adult onset and non-ANA, can get involved comfortably. As I said, I know many adults who are not hooked into the FA community, but they might well be if they saw something of interest and benefit to them.

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

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

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By nosoyforme on Wed, 08-22-07, 15:31

Try this site for adults with food allergies.
I found it very helpful.[url]http://www.angelfire.com/mi/FAST/advicesupport.html[/url]
Also try:
[url="http://www.livingwithout.com/welcome.htm"]http://www.livingwithout.com/welcome.htm[/url]
This is a magazine with some helpful tips.
Good luck. I know it is hard.

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Allergic to all soy, all nuts, peas, beans, sunflower. Started at age 40.

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Allergic to all soy, all nuts, peas, beans, sunflower. Started at age 40.

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By christinems on Thu, 08-30-07, 12:34

Hi,
I AM someone who has adult onset TN/oral allergy syndrome and I do know a couple of other people who have developed other allergies in adulthood. It is not as rare as we think and a recent article (can't find it) claims it is on the increase. Mount Sinai in NY is doing a study on how we as adults cope. Wish I lived in NY.

I have found the same problems trying to connect with Adults (NOT parents) with FA. Perhaps you are correct in guessing that many adults have been just suffering for years alone and have found, like us, not much support out there.

I actually started this "Adult Topics" a few years ago when I met Chris (the founder of PA.com). I was so discouraged by the main focus on Parent Support Groups. They are absolutely needed, but support for adults is needed too. The challenges are quite different as we age. I probably do not need to go into the differences. I'm sure you know them all.

I have tried, through a therapist, to start an adult group in the Boston/NS area and she found that the allergist's offices she visited were not at all interested in even offering her materials.

I just want any other adult with FA to know that they are not alone. In my opinin it is very important to make our physicians AWARE that adults need support too. This will become very obvious as the huge generation of FA kids enter our world. At least they have a network formed by their parents, so that is a positive thing, IF they ever leave home!

Anyone who is interested in actually meeting other FA adults face to face in a safe environment should try to form a group no matter how small. Just knowing one other person who REALLY understands helps so much.

I guess we have to just get the word out there so we can live more comfortably in the real world.

Best to all of you. Feel free to email me at [email]cdesign99@yahoo.com[/email]

-Christine

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