I am choosing to share the story of my health journey (and the pictures!) here because I spent over 15 years feeling very alone with my symptoms and I don’t want others to have the same experience. At the time of my diagnosis, there was very little information available about angioedema, and to be honest the doctors didn’t even seem confident in that diagnosis. They also told me things like “you’ll grow out of it.” “Your body is allergic to itself.” and my favorite “we have no idea what is wrong. You are a medical mystery.” To be honest, I didn’t even know that angioedema was an actual disease–I thought it was just a fancy way of saying “swelling.” It is only in the last few months that I have sought more answers, done more research, and gone back to that original diagnosis. I am pleasantly surprised with the amount of information that is available today, as compared to the last time I checked, and especially when compared to what was available in the early 2000s. What is still lacking, however, is the presence of personal stories. I have felt alone for most of this journey, until recently as I’ve reached out to the autoimmune community, finding solace in the fact that we are all searching for answers, despite our differing symptoms. So here I share my personal story with angioedema, in the hopes that anyone with similar symptoms will find my story and know that they are not alone.
**A few other notes:
I have not been tested to know if I have hereditary angioedema (HAE) or autoimmune angioedema (to be honest, I’m not even quite sure I understand all of the differences between the two–I would guess that they’re a lot more related than we believe, but there’s not a lot of info out there). I believe that my diet and lifestyle choices are an effective way of managing whatever variation I may have, and I don’t feel the need to have the test to differentiate at this point in time.
While many suffer severe anaphylactic angioedema reactions, I have never had any flare ups that have majorly restricted my airway. We have been very cautious and carefully monitor my breathing and airways, knowing this is a possibility. These sorts of life threatening reactions should be taken very seriously with appropriate medical attention.