My case isn't this advanced yet. I don't really have eloquent words to add to this, so just watch the video.
**added note: there is nothing worse than having this illness and having no one believe you (not even your doctors). because of its rarity, there are still a number of doctors who have never heard of this and they treat you like a complete idiot when you try and explain this. when i finally did get diagnosed, the doctor congratulated me on self-diagnosing (which was the exact same thing that the other doctors had scorned). keep fighting. find a doctor who will listen.
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