Living with Angioedema

I would also like to mention some practical tips for fellow Angioedema patients :)

Make sure you keep a little photo album with pictures of your Angioedema attacks. In my experience, most people (even doctors!) have an easier time comprehending a chronic illness when they can visually see how it affects someone.

For those of you who are still in school, please inform all your teachers what is going on with you. Ask your parents to meet up with each one of your teachers to thoroughly explain the situation, to really get them to understand that you being absent from school a lot has nothing to do with a lack of interest, but that the attacks make you feel very ill.
Back in the day, I had written my teachers a letter, but most of them just put it aside and never even read it. I still remember asking my English teacher whether he had read it and he replied "no, I have enough work to do, I didn't have time for it" :( I never received any help from my teachers and that made my life at high school a very unpleasant one. Please learn from my mistake.

Don't immediately give up on a food! For instance, for a long time I thought I was allergic to tangerines. Until one day I bought some at an organic store and I didn't get any allergic reaction whatsoever! I was flabbergasted. So I did a little test and bought some from a supermarket...and guess what? Allergic reaction. So I'm guessing I must've had an allergic reaction to a pesticide or something. But all that time I thought it was the tangerine itself... Same goes for strawberries! I can't eat fresh strawberries, but I can eat strawberry jam. Weird huh?

And last, but certainly not least. You are not your illness. Your illness does not define who you are as a person. You're still YOU! Always keep that in mind and focus on the things that make you happy.

Find something that will distract you from being ill. It may not make you any healthier physically, but it sure helps to cope with things on an emotional level :) For me, it turned out I love making videos when I feel well enough. And of course sometimes it's difficult. Especially when you want to upload regularly, but you can't because your silly body gets in the way of that hahaha! But having such a creative outlet always makes me feel like a normal, healthy person :) I get to have fun and meet new people from all over the world. And that makes me so happy :)

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**Overview For Easy Skipping Ahead **

[00:04] Intro
[00:37] What is Angioedema?
[01:46] My history with Angioedema
[02:10] Pictures of me with Angioedema
[02:19] My first Angioedema attack
[04:41] Medication
[07:34] Frequency & Girly Stuff
[08:40] So? Just avoid allergens, you n00b!
[11:02] Final Thoughts


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For more information:

US Hereditary Angioedema Association - http://www.haea.org
Vereniging voor Hereditair Angio en Quincke's Oedeem -http://www.hae-qe.nl
Canadian Hereditary Angioedema Network - http://www.haecanada.com

(Strange how there's no American association for people with Quincke's Edema...)

Category:

Howto & Style

Tags:

• Angioedema
• Urticaria
• Myoclonic
• Dystonia
• QE
• HAE
• Quincke's
• Edema

[Wittje84]

Ik vind jouw echt een kanjer!!!!!!!!!!!!!!! Je bent een geweldige persoon.

[Dottilicious]

@Wittje84 Aww wat lief! Dank je wel! :)

[glintzy]

You're such a strong woman, I'm inspired by your courage Suzy. Hugs!

[Dottilicious]

@glintzy Thank you so much, Aimee!! That means a lot to me :)

[lajenoui]

There are no words to say how much I love you right now.

Everyone else has said exactly what I feel - that you're inspiring and brave and AWESOME - and I am so incredibly proud of you! I feel so lucky to have both you & Russ in my life <3

Really well done for doing this video, I hope it helps a lot of people feel less alone.

[NarutoGlen]

Have you tried Allegra, Singulair, and Zycam? see doctor for appropriate dosages... I am 18 and have had similar problems since I was 8. I was first put on Zyrtec when needed, then daily Zyrtec, then twice daily, then Benadryl (too sleepy...). so... the doctors changed it to the three i listed above. Blood work done, allergy screening and... nothing... The three have kept symptoms down... but i have to take methylprednisolone about thrice a year because the antihistamines stopped working

[jorgebodila]

@viper11blue do you have Allergic angioedema? or herditary? thanks

[jorgebodila]

thanks for the information. And to share with the people. You are a very strong woman. I have HAE, and i was suffering the last 20 years this disease.I´m 39. I live in Mexico and i don´t have too much options to be medicated. Now i am taking DANAZOL 100 mg, and feeling asintomatic. i hope you´ll feel much better with the new drugs.

[viper11blue]

thank you soo much for this video, i have just been diagnossed with this illness, i have had anavolectic shock 8 times in three weeks.

Finally i was pescibed prednezone and the swelling is subsiding,I go to the specialist in 4 days,hoping for some sort of answers.

One thing i would like to ask you is if you still work,I am a truck driver and just got put on Employment Insurance Sick Leave cause i never know when an attack will come on.

feel free to inbox me with any advise. thx again.

[CzarinaLace]

Thank you for this video! You always make me feel like the world's a brighter place, whenever you talk. That's so crucial. Lots of love. xo

[themh76]

you can use a birth protection injection (or do you want to get pregnant) that keeps your menstruation away

[Mohannadkattan]

Suzi you are amazing!! Thank you very much

[Kpjdr25]

Wow - kan mij niet voorstellen hoe lastig dit (vaak) moet zijn! Zelf heb ik erg hooikoorts en ook allergisch voor veel fruit, noten en ook medicijnen maar na zoveel jaar weet ik wel waar ik niet tegen kan. Voor mijn hooikoorts gebruik ik het gehele jaar door Xyzal - nadat mjin allergoloog 4 verschillende soorten antihistamine heeft voorgeschreven, blijkt deze bij mij al een aantal jaar heel goed te werken en heb ik nauwlijks extra medicijnen nodig. Misschien is Xyzal een andere optie voor je?

[Elvionx]

It's so true that was can't just avoid the unknown that makes us sick.

It's strange when people ask "Are you a cat or dog person?" I always say "I only like cute photos of them and not the real thing".