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)
It's pretty unknown. When I first started the medication, I was hoping I would be able to go back to school as soon as I wasn't having to go for medication training. There was such an immediate improvement.
I was in such a fog before starting treatment though, that I didn't really realize how sick I was. When I started having some good times, I finally realized just how bad lows are and how much I really should be resting instead of pushing through them.
Some longer good stretches were giving me hope for returning to school, but then they would be followed by bad periods. It's so unpredictable and I think returning to school is unlikely - my health doesn't go through good & bad patches on a semester basis. There's also a bit of an all or nothing expectation with graduate school, so continuing at this point seems like a poor option.
I have found that winter is a tougher period. I would like to start tutoring. Since spring is generally a good time for me I would like to try that out next year. I would have done so this year, but I had my wisdom teeth out a few weeks ago and that has been causing me more attacks.
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
@Reny58hae
Do you have a proper diagnosis? Angioedema is due to one of 2 different chemicals - histamine or bradykinin. If yours is bradykinin based - as all of the hereditary angioedema types are, as well as some acquired forums and ACE-inhibitor induced angioedema the big thing I would say is to learn about what options you have for your area and be assertive during an attack to get appropriate treatment. Doctors most often see histamine-mediated angioedema such as what occurs allergic reactions and they tend to default to those treatments for all forms of angioedema.
People with HAE really do very differently. Due to how often I have attacks I'm on long term prophylaxis medication. Some people only have a few attacks a year without medication. Stress can be a trigger, so you may do really well and the start of your new job was just that trigger.
I'm often in disability support if you want to chat. Or tag me in the forums!
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.