I'm so glad I found this section. Just a quick vent hoping someone can commiserate. My daughter Lily is 10 years old. She is a Make A Wish kid getting her wish this Friday when we go as a family on a Disney cruise for her to swim with dolphins. She has a hidden disease/disorder. She has a neurological disorder-- a severe form of epilepsy. It is life threatening and she has a 1 in 10 chance of dying before she reaches 18. My gripe is this...she looks "completely normal" and people say rude inconsiderate things because they look at her and don't SEE a physical impairment. Yet if they really knew my daughter, they would see the signs that she is not well. The little things that they don't know are signs she is having a seizure standing right there in front of them. Sometimes hundreds a day. It is just so frustrating for people to second guess her diagnosis or try to tell us she probably has "something else" or to be condescending at the seriousness of her illness. We have one of the best neurologists where we live. She has done labs every 3 months or more often for 5 years. It is clearly visible in her MRI, her EEG, her labs... do I need to carry around a medical folder for people to read and understand. People have said to her "there's nothing wrong with you, you look completely normal." Seriously? To a 10 year old?? She shouldn't have to tell you her medical history because you can't see her medical condition or because she doesn't have visual symptoms all of the time. I could go on and on. This ignorance is part of the reason we are homeschooling her this year. It is also what led to her condition worsening, if truth be told. I just can't believe in this day and age, people (this is a general people...as in the public as a whole) do NOT understand that you can die from something that cannot be seen. And just because you have a full head of hair and can run and play doesn't mean that you aren't deserving of having your wish granted. Is there anyone out there who gets this? Anyone else who experiences this??