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I had a patient in the emergency department present with anaphylaxis to a bee sting. She thankfully, had her own epi pen with her and had been anticipating this moment for over a decade after discovering her allergy to bees. But what she said was interesting. She got stung in her own house, taking her by surprise as she had avoided picnics, hikes in the woods and even sometimes just playing in the yard because of her allergy to bees. This bee had been sneaky and was inside a soda can she picked up to drink.

I thought about us. Our hardest moment comes right after our wave of relief; explaining why we had been passing out or having unexplained seizures. Sometimes, it was even an aborted cardiac arrest or another family member that died to get us tested and diagnosed. I live these moments with patients all the time, the moment when life will never be the same again. I know exactly how they feel. But the wave of relief we feel after getting it finally sorted out is quickly replaced by horrific fear and many questions. The one that comes up fast and furious is – what’s next? And how do I go forward thinking I might not wake up in the morning?

What I can tell you is only my experience. I did feel relief quickly tempered by fear. But the statistics you read about cardiac arrest from SADS conditions are the ones that aren’t well managed and expertly treated. I don’t have those specific numbers but they are much lower than the ones you read when you google your newly diagnosed condition. First step, get a good doctor, in fact, get an expert if you can. We can help you do this. Next step, partner with your doctor to get individualized care. Then, walk out the front door. Much like the person with life threatening anaphylaxis being afraid of bees was natural, but never experiencing the grass barefoot in the summer or a hike in the woods is equally tragic.