I sometimes forget that I have HAE. Those are what I refer to as the good days- the days where I don't get attacks (what we call our episodes of sickness). Sometimes the good days last for months at a time. But other times the attacks are constant. Since this disease is a bit of a freak of nature to begin with (only about 1 in 150 000 are affected) it's not surprising that it's also unpredictable in it's ways. You can never really know when it's going to start but when it does... you're in for a ride.
HAE doesn't care about you. It doesn't care about your obligations, your priorities, your plans. It'll occur whenever it wants to and also last for an undetermined amount of time. An "attack" consists of the swelling of one or various parts of the body, both external and internal. Most people who have HAE don't really know what causes their attacks. Some people have theories or educated guesses about what could be causing theirs, and when they stay away from certain foods, etc that they think are the "triggers" they do see a difference. Because of this, people often compare it to an allergic reaction and let me tell you that is the worst thing you could ever say to a person who suffers from HAE. It's bad enough that nobody understands what we're going through, and that most doctors don't even know that this disease even exists or how to treat it.
I'm constantly searching (in vain, up until now) for people who might be able to relate. I've searched for groups on Facebook, I've scoured the internet.. and here I am, thousands of Google searches later, blogging about how lonely this disease can really make you feel.
So consider this my invitation. I'm reaching out my hands. I'm extending an olive branch. If your eyes should ever happen to meet this little paragraph of words and you suffer from hereditary angioedema, or anything similar, and want to communicate with other people who feel your pain, don't hesitate.
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E-mail me: celinaflores@live.ca
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