Originally Posted by
whatthewhat
Hey, my two cents, which may be worth less than that. Our daughter uses at least one app regarding her WG. I don't use any app for anything lol. My point is that younger generations are probably more likely to use any sort of app. We know dozens of kids 21 and under who deal with WG and who can make an incredible contribution to the body of knowledge about this disease. If there's a way to get wording to be inclusive of all ages, that would be awesome. For example, kids usually don't have work, but missing school is a big deal. And if they move away to college, they often have a need to coordinate care between a doctor local to their school and their doctor back home. Tracking mentrual cycles is another layer to this that differs from pediatric to adults. Seems like a lot of pediatric-onset WG occurs towards the beginning of puberty, which means cycles haven't started or are still irregular. When kids are first diagnosed they are often in extreme crisis and are administered Cytoxan, which disrupts cycles more. Sterility or even "normalcy" is such a big deal to adolescents, and a way to track that might be of interest.