Rare Disease Day

Blog, Lifestyle, Medical, Personal experience 1 Minute

Many of you know that I live with 2 rare conditions: Hereditary angioedema and Mast cell disease. They aren’t pretty and they aren’t flattering. But they are real.

I haven’t wanted to take or show many pictures of myself because of how different I look. I don’t recognize myself and sometimes I feel embarrassed by my appearance. I was afraid of being judged by others the way I have been judging myself.

But since today is Rare Disease Day and it’s about spreading awareness, I am sharing some unpretty, unflattering, but real pictures of me living with these conditions.

Hereditary angioedema of my tongue
Hereditary angioedema of my belly
Treatment I have to inject myself any time I have swelling
Intubated/on the ventilator in November 2019 due to throat swelling
Swollen face and cataracts from prednisone. This was right after cataract surgery earlier this month.

Published by Delicate and brutal

I have been told most of my adult life that I should write about my life stories and experiences. After my life took an unexpected turn due to several life altering medical conditions, I decided to try this blog as a creative outlet. I will share some very personal and medical experiences on here writing in my own voice as if I was having a conversation with you. So fair warning, things will be getting "too real" at times!

Published

9 thoughts on “Rare Disease Day”

  1. I want to tell you, Amy, that you are one of the most beautiful people I have met. Your soul and strength and grace in managing your condition is beyond me. Thank you for the inspiration.

    Liked by 1 person

    Reply

    1. Thank you for such kind words! I don’t always feel beautiful or graceful but I am so grateful and blessed to have a wonderful support community especially on those days I don’t feel my best. I appreciate your friendship and would love to have tea and scones one day at your little cafe with all the plants 🙂

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  2. Thanks for sharing these pictures. you are very brave. I absolutely abhor needles and can’t imagine how you can give yourself shots yourself at home. I hope that you are doing well & don’t let this get you down.

    Liked by 1 person

    Reply

    1. Thank you Helen! It took some getting used to having to give myself treatment at home. I am doing ok. Thankful I am mot in the hospital and trying to do everything I can to stay out of there.

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