10 second sound bite
Usually when someone first asks about what has happened to my daughter, I give them a 10 second sound bite. That’s all that’s needed to determine if they are genuinely concerned. I quickly came to realize that many people only ask to be polite, some ask out of curiosity, and then there are those who have a compassion for our family. The first response after my sound bite reveals their level of involvement, and at that point, we either move on to other topics, or then I will allow them to ask all the technical questions they want. This is also the best opportunity I can think of to remind people to donate blood – and if I see that they “get” the message, I go on to further educate them that donating plasma (as opposed to just donating blood) is especially appreciated by those of us who have this disorder.
My Sound Bite: “A rare crippling disorder where the immune system attacks the body.”