I have Hereditary Angioedema - AMA
Today is HAE Day - a day to spread awareness about hereditary angioedema.
I was diagnosed with this blood & immune disorder that can cause swelling anywhere there are blood vessels in 2014. I mostly get throat swelling that can be life-threatening due to the possibility of my airway being blocked.
Ask me anything!
Thank you for starting this thread @affectionateAvocado35❤ I have to admit that I'm completely clueless about this disorder, so it's fantastic that you've brought it to our attention
Do you feel that having HAE affects your daily life in a big way? Do you have to make a lot of preparations wherever you go, in case it strikes?
Yes, it affects me quite a bit. Some people get massive attacks a handful of times in a year. For me, I am constantly close to a minor attack it seems and I'm frequently quite fatigued because of it. It doesn't take much to trigger one - being around something that bothers my allergies more than usual, weather changes, minor physical exertion.
Do to this I'm currently on medical leave.
I do have a medication kit I bring everywhere with me. I have to administer it via IV, so this kit includes needles, syringes, sanitizing wipes, and a tourniquet in addition to the medication & mixing supplies. When I was still learning to self infuse, I did not want to travel at all as I wasn't comfortable being far from the hospital. Now, I'm more confident I can get what I refer to my emergency sites if I have an attack. I prefer to have my husband around, as I like to save my easy spots for emergencies and it's always easier to have an extra hand to help. Having to treat an attack in public is also awkward.
I can see how that would make you afraid to travel, I can't even begin to imagine what it's like to live with that threat. That's a lot of medical equipment to come to terms with as well.
Do you have any idea when you might be able to go back to work, or is it all one big unknown for you?
(PS For those as clueless as me, I found a really good NHS page on Angioedemahere)
I was diagnosed recently with angioedema and I'm so lost with why and how did I get this disease..I started a new job on Monday and woke up to my face swollen..I'm scared
Hi there :)
I too, have angioedema but it is histamine-related. I remembered when I was younger, about 12 years I think, my eyes swell really bad for no reason. My teacher was so scared that she sent me home. Took me a year visiting gp one after another, before one of them suspected angioedema. I also have brufen allergy coupled with angioedema. Brufen triggers it. I have no idea where I got this from, my parents do not have this. I hated it, it often scares many people (you know the eye and lip swelling looks freakish) and it is very uncomfortable. I get stomach pains along though rarely but hurts very badly. Doctors say stomach pains are not related, but I read somewhere that stomach pains can be a symptom.
@theblacksheep Sorry you have to deal with that! Swells are tough!
It's HAE Day :-)
Bumping this up for this year.
