One thing that almost every person living with or caring for someone living with hereditary angioedema (HAE) knows is that over time…
No one knows more about hereditary angioedema than those dealing it.
Especially in the rare disease community, medical professionals are often baffled themselves at what they are looking at when it comes to patients showing signs or symptoms of rare disorders.
Specifically for those with HAE. So, here are 10 things every HAE patient strongly wants their healthcare providers to know.
1. I have been through this before.
Sometimes reassuring them that this isn’t your first rodeo can help ease their sudden speechlessness from not knowing what the heck is going on.
2. I’m not trying to “play doctor” or disrespect you and your years of training; but unless you’re an expert on hereditary angioedema, there’s a good chance I know more about the disease than you do. I’m willing to trust you if you’ll trust me!
Most HAE patients should probably have doctorates by now from all the research.
3. I have been LEGITIMATELY DIAGNOSED with hereditary angioedema, also called HAE; I can prove it, so BELIEVE ME when I tell you what doesn’t work and what does!
Sometimes (most times) they just need to take your word for it.
4. I am not a “drug seeker”! Call my HAE doctor or nurse—she’ll tell you the only thing I’m addicted to is grilled cheese!
I mean who doesn’t love that yellowy goodness between two crisp pieces of bread.
5. Please don’t just pretend to call my doctor or nurse—I know you’re busy, but the last time that happened to me, I almost died.
And no. It wasn’t busy.
6. I am not “work shy” or “attention-seeking”—I’m sorry you have to deal with people who are, but I have HAE—attacks happen randomly and can be life-threatening
Let’s not let it get to this point people!
7. I probably don’t need any organs removed—treat me for HAE first, THEN we’ll see if it’s appendicitis/gall bladder/endometriosis/whatever you think it is. I’ve already had too many organs removed unnecessarily.
And the money was only going one way with those removals. The wrong way!
8. If I’m female, I know my abdominal swelling makes it look like I’m pregnant, but I’m not—believe me, I pay close attention to that aspect of my life.
Yeah….let’s leave the jumping to conclusions at the door.
9. My pain is NOT “all in my head”—hereditary angioedema swelling can be excruciatingly painful; it can also cause vomiting
You are messing with the wrong people.
10. I am grateful you are there, working long hours, under stressful conditions, to save my life.
At the end of the day, we are all on the same team and grateful for all the medical professionals helping hereditary angioedema patients everywhere!