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MimiWeed

649d

How do you explain you episodes to others? ... Also I am not currently on medication for Angeodiema they said I was young and should enjoy life since it's not too bad, but it's begun picking up speed and I've begun getting attacks every month or so. What should I do?

Top reply
    • elle23

      315d

      @HAE_I_C1_You I live in London. They are expensive like 1000£ per package but thanks to nhs here I have it for free.

    • HAE_I_C1_You

      315d

      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.

    • elle23

      375d

      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. 🤗

      • HAE_I_C1_You

        315d

        @elle23 You have access to Berinert injection? Which city/ part of the world do you live?

        • elle23

          315d

          @HAE_I_C1_You I live in London. They are expensive like 1000£ per package but thanks to nhs here I have it for free.

    • Ellie24

      637d

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

    • Ellie24

      637d

      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.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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