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Dr. Amy K. Morgan

Amy K. Morgan, PhD

Dr. Amy Morgan: One of the most important things for parents of children with tuberous sclerosis complex is to get as much education as possible and to know as much about TSC and their child's particular condition as possible. Then it's easier to convey that information to others and convey that information to their child. An important thing to remember when talking to a child about this, whether it be a child who is affected, or a sibling, or a peer, is to do it in a developmentally appropriate way, so that it's not overwhelming or scary for the child. So, for example, when speaking with younger children, you want to be very concrete and be sure that you address all of their concerns, and listen carefully to questions they might have. So, for example, younger children who are very concrete may think that they've either caused themselves to have the illness, caused their sibling to have it, that the illness might be contagious, things like that. So addressing those basic concerns. And then, I think showing them things about tuberous sclerosis using pictures, illustrations and things like that. And then just examples in everyday life can be very helpful. One of the things about having a genetic disorder is that people think you have bad genes. And I think it's important to know that, or to even point out to people if the subject arises that, we all kind of have you know, little glitches in our genetic makeup. And people with tuberous sclerosis, it just manifests in the way it does, because of their particular genes that are affected. And so, normalizing the child and the information for other parents, peers, teachers, the child and the siblings, is very important. And it also is important for the child, because then they can learn to accept themselves. That this isn't something scary. It's not something to be ashamed of.