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Thursday, 2 March 2023

Rare Disease Day - Mind-Blowing Daily Symptoms



Feb 28 is Rare Disease Day! 

What very normal/daily symptom do you deal with that would be considered mind-blowing to someone who has never dealt with illness? 

Even though the swelling diagnosis is up in the air for exactly what it is, the default potential diagnosis that I have is HAE 3, which is considered a rare disease. So, since I started experiencing frequent and drastic swelling, I think the 'normal' symptom I deal with on a regular basis is the chest and intestinal swelling due to emotions. I have to keep as even-keeled as humanly possible to ward off serious swelling in my chest and intestines. Any normal emotion that sways off of even is risky. A chest/throat swell will cause breathing issues and could cause what is often mistaken for anaphylaxis. I get chest swelling from simple nerves, ANY intimacy whatsoever, physical exertion like a workout, if I'm upset or angry about anything at all, or a startle. The intestinal swelling can happen from eating something wrong or too much or too little, nerves, intimacy, hormone changes (when I had my ovaries I would have 6-10 hour long vomiting fits every month along with my period), etc... 
So everything that we do normally - things like eat, have emotions, have sex, work out - I have to constantly and consciously think about and be cautious about because it might result in me giving myself an IV or a trip to the ER and be treated for stridor breathing, breathing difficulties, or organ swelling. 

I mean, can you imagine getting cut off in traffic, or having an argument with a partner, and have to ALSO worry about literally not being able to breathe because of it? Because of a normal and common emotional change...

I would love to hear what normal/common/daily symptom(s) you deal with that would seem mind-blowing to healthy people. 

A few answers that were given include constant nausea, constant pain in multiple places, swollen purple toes, etc... 

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