Explaining My Episodes: Tips and Tricks

I find people's eyes glaze over and they don't really understand. Asking people to google image HAE or C1 inhibitor deficiency is helpful or showing rhem a picture.

I have HAE, since baby I always had it and discovered it when I was 19. So since then because is a rare condition, I just say it acts like allergy but is not. Parts of my body, swell like feet and hands (as an example). It causes abdominal pain, if left untreated it gets worse. The rare case of it if my throat swell I might die from asphyxia if not treatment. For me to treat I just need to inject my self with Berinert, and it goes away. 🤗

Also, are you asking specifically for Angioedema or hereditary Angioedema bc they are completely different things

Hi! It depends on who I’m explaining it to. If it’s friends or someone random I’m vague, but if it’s someone in healthcare I use all the medical terms. I typically explain my HAE as a condition that causes swelling anywhere in my body- internal or external- due to a missing protein in my blood which causes swelling. I explain where I typically get attacks (for me it’s abdominal and throat) So for abdominal I say it’s very painful. It’s like a slow progression of waves of pain that if left untreated can cause me excruciating pain for 3-4 days. Then I explain how throat swells can close my airway. I really really emphasize that it’s not an allergic reaction and is a deficiency of something in my blood.