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Old 01-07-2005, 07:55 PM   #1
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Allegory HB User
Any adults here with anaphylaxis?

Hi,

This is my first thread on the board. I found this site by trying to search for anaphylaxis support groups. It seems there is a lot for children and their parents but not for adults. Yet.

I would like to share with you that I have a severe allergy to red meat. I have other mild allergies to the common allergic susbtances (dust, dairy etc) but they are not life threatening. My anaphylaxis allergy is very uncommon and as such receives a great deal of negative attitude 'oh another crazy vegetarian' but believe me the truth is its not a pretty sight.

Im coming to terms with my allergy and I would really like to communicate with others who are afflicted because there are issues which arise, and emotions you go through, that not many people can understand. I used to have no support but got myself out of that situation and now am really supported, understood and respected in my allergies.

I am going to dedicate a huge proportion of my life to raising the awareness of anaphylaxis, so you will be seeing me around this board as well.

Hi everyone,
Liz,
Allergory
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Old 01-08-2005, 09:57 AM   #2
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CheerAngel HB User
Re: Any adults here with anaphylaxis?

Hi Liz, I'm sure there are anaphylaxis support group out there as I have seen before but I can't disclose them out here I guess. Maybe you could search again using different words or phrasing. It must be real hard for you when people just don't understand. It's worse when you try to explain to them and they give you 'funny' comments and weird looks... Do you shock even when you don't take red meat or does it happens only with red meat? =)

 
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Old 01-08-2005, 10:55 AM   #3
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AllergyBob HB User
Re: Any adults here with anaphylaxis?

Liz
Try typing:

the anaphylaxis campaign

into google - there is help out there (other than this excellent board)
good luck
Bob
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Old 01-08-2005, 03:16 PM   #4
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Re: Any adults here with anaphylaxis?

Quote:
Its worse when you try to explain to them and they give you 'funny' comments and weird looks... Do you shock even when you don't take red meat or does it happens only with red meat? =)
Hey guys thanks for the tips, I will have another search and let you know if I can find anything.

I have even had healthcare professionals not take me seriously, or the most common comment is 'hey you should try organic meat' which just goes to show their ignorance about anaphylaxis but more importantly the need to raise the awareness of anaphylaxis.

I have only gone into shock (6 times) from red meat, (anything from beef and pork to ham). I do get bad reactions from dust, sometimes a rash but mainly terrible sneexing and mucous. Im mildly, well what I consider mild anyway, allergic to about 15 different things but only shock to red meat.

People say how hard it must be, and its taken years for me to come to terms with it as its ongoing but Im thankful Im not anaphylactic to peanuts which would require more diligence. Im fine with nuts.
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Old 01-08-2005, 06:58 PM   #5
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FrontierDriver2 HB User
Re: Any adults here with anaphylaxis?

My father has anaphylaxis. He is allergic to many things like peanuts, dogs, cheese to name a few. He has nearly died several times because the reactions were so severe. He is kept in the hospital overnight if he has a reaction. He took allergy shots for a while, and takes allergy medicine everyday and this seems to have stopped his attacks. He also has an Epi-Pen to use in case of a reaction. I really hope he doesnt have anymore. They became increasingly severe each time. His hands and feet would begin to itch, then his throat would swell shut.

Good luck with your allergys. I know how scary the anaphylaxis attacks are.

 
Old 01-09-2005, 05:58 AM   #6
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Cool Re: Any adults here with anaphylaxis?

Quote:
Originally Posted by Allegory
...Im fine with nuts.
Me too - I work with several

Seriously though, have you had skin tests or blood (RAST) tests to confirm your allergies? If so, what were the results? If they showed positive, then you should know that the skepticism you have encountered is totally unfounded, and this should help you to come to terms with your situation.
And yes - meat is meat, organic or not - makes no difference, if you're allergic to it, being organic won't help!
Best wishes
Bob
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Old 01-09-2005, 02:47 PM   #7
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Re: Any adults here with anaphylaxis?

Quote:
Originally Posted by AllergyBob
Me too - I work with several

Seriously though, have you had skin tests or blood (RAST) tests to confirm your allergies? If so, what were the results? If they showed positive, then you should know that the skepticism you have encountered is totally unfounded, and this should help you to come to terms with your situation.
And yes - meat is meat, organic or not - makes no difference, if you're allergic to it, being organic won't help!
Best wishes
Bob
hehe...

Thanks, and Yes Bob I have had several skin tests, I get them done at least once every 2 years. Every time they have shown up the severe allergy - any red meat dilutions make a welt about 10mmx10mm! Oh, so itchy as well. I do understand that I definately have the allergy, and I carry an epipen and its friends the phernergan and steroids around with me everywhere but you would be surprised (or maybe not) what reactions people have given me. Some people dont accept things until its socially accepted first. A peanut allergy is common, no way anyone would suggest to try organic peanuts!
And like Im going to risk my life 'trying' organic meat - I cant even smell the stuff without confronting the emotion of it all.

I have had best friends tell me Im too hard work because they have to consider my allergies - needless to say they are no longer my friends!

So Ive begun a personal crusade to spread the awareness of anaphylaxis. Even my mum didnt realise the seriousness of it until she saw it, poor thing, scared her so much. So I tell everyone now and Im proud of it, if people are too ignorant to accept new ideas then they are in for a lovely discussion. It has been hard but now I have taken a new spin on it, thanks to the support of loved ones.

Do you work with allergies Bob? (excuse my ignorance, Im a newby here)
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Old 01-10-2005, 09:36 AM   #8
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AllergyBob HB User
Re: Any adults here with anaphylaxis?

Quote:
Originally Posted by Allegory
So Ive begun a personal crusade to spread the awareness of anaphylaxis. Even my mum didnt realise the seriousness of it until she saw it, poor thing, scared her so much. So I tell everyone now and Im proud of it, if people are too ignorant to accept new ideas then they are in for a lovely discussion. It has been hard but now I have taken a new spin on it, thanks to the support of loved ones.

Do you work with allergies Bob? (excuse my ignorance, Im a newby here)


Can't tell you about my work, as (understandably) it's banned on this forum.

I had a major skin problem some years back (head to toe), and can fully empathise with the feelings of being a "social leper" when you have a condition that Joe public at large doesn't understand. Apart from the physical discomfort, I became really quite depressed, and found it hard to leave the house. Thankfully fully recovered now, but still remember the time with bad memories.

Good luck with the campaign, sounds as though you're winning. Keep it up!
brgds
B
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Old 01-11-2005, 02:16 PM   #9
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Re: Any adults here with anaphylaxis?

Whoops! Lucky I added in that Im a newby, sorry mate.

Gee it sounds like you copt the brunt of external allergies, sounds like there was something you needed to present to the world in order to get a few answers, Im sorry to hear that it was a hard road for you. Im glad you have recovered. It is quite hard to stay strong when everyone around you is far from understanding.

Isnt it amazing the impact that some understanding from good people can give you? I was the same, so sad I was house bound, but I made a choice to find good people, it was very hard but thats what brought me out of my depression with the whole thing, how about you?

Do you find you are understanding, sympathetic or guiding to people you see with skin allergies now?
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Old 01-11-2005, 02:20 PM   #10
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Re: Any adults here with anaphylaxis?

Quote:
Originally Posted by FrontierDriver2
My father has anaphylaxis. He is allergic to many things like peanuts, dogs, cheese to name a few. He has nearly died several times because the reactions were so severe. He is kept in the hospital overnight if he has a reaction. He took allergy shots for a while, and takes allergy medicine everyday and this seems to have stopped his attacks. He also has an Epi-Pen to use in case of a reaction. I really hope he doesnt have anymore. They became increasingly severe each time. His hands and feet would begin to itch, then his throat would swell shut.

Good luck with your allergys. I know how scary the anaphylaxis attacks are.
That must be so hard from your point of view. It sounds like you are very understanding and supportive though and that is the main thing you can do. Without support its easy for an anaphylactic person, if they havent had an attack in years, to get complacent and not take their epipen with them. This is dangerous, so it sounds like you are aware of the symptoms to look out for as well and thats fantastic.

Thanks for the good luck, I made an effort to surround myself with understanding people like yourself and it makes a massive difference, I can tell you. Good luck to your father.
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Old 01-12-2005, 07:57 AM   #11
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AllergyBob HB User
Re: Any adults here with anaphylaxis?

Quote:
Originally Posted by Allegory
Whoops! Lucky I added in that Im a newby, sorry mate.

whooops me too - nearly told you before re-reading the rules!

Gee it sounds like you copt the brunt of external allergies, sounds like there was something you needed to present to the world in order to get a few answers, Im sorry to hear that it was a hard road for you. Im glad you have recovered. It is quite hard to stay strong when everyone around you is far from understanding.

Isnt it amazing the impact that some understanding from good people can give you? I was the same, so sad I was house bound, but I made a choice to find good people, it was very hard but thats what brought me out of my depression with the whole thing, how about you?

Do you find you are understanding, sympathetic or guiding to people you see with skin allergies now?
never did get to the bottom of it. I was badly let down by my own GP and local hospital. I paid a fair amount of money to see a private dermatologist. I ended up on MASSIVE doses of antihistamines and steroids - had to carry an alert card, and slowly wean off. I also slurped around the house covered in a cream called cetomacrogol (funny how you remember things like that innit?). It was winter and I looked as though I had been lying on a beach for a month. My skin was RED HOT, and the medics were worried that I might get hypothermia. Then it all started to shed, split and bleed - hence the feeling of being a social leper. I'm talking scalp to toes. Anyway, it did clear up, was never fully investigated and has never re-occured. The dr put it down to stress. I suspect that may be true, as I was working very hard setting up a new business at the time.

Re sympathy & understanding - yes I have a great deal of sympathy for anybody who suffers from a "socially unacceptable" condition. Funny isn't it - you break your leg and you're somehow regarded as a hero - you get a skin condition and everybody runs for cover...

Came across a little 6 year old recently, poor little mite was covered in itchy rashes. After many RAST tests, turned out she was allergic to strawberries & oranges. These were immediately with drawn from her diet. Got a card from her mum some weeks later, and whilst not fully recovered, had markedly improved.

good luck
Bob
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