Tuberous sclerosis is a genetic disorder that affects multiple parts of the body. Children or adults can have tuberous sclerosis, and it will affect them for their entire life. Tuberous sclerosis can be diagnosed in any age. It can actually be suspected prenatally, but often is diagnosed after birth, and because the clinical signs of tuberous sclerosis vary by age, we have to be looking for different things at each age. The problems that little babies face is quite different than what an adult might face. In babies, we have to make sure we look closely at their heart, at their skin. All babies with suspected tuberous sclerosis should have a scan of their brain and have their eyes looked at. This is different than adults, where it may impact their lungs and their kidneys to a greater degree than what we see in little kids.
While there's no cure for tuberous sclerosis, there are some targeted treatments that we now are able to use. Here at UVA, we're proud to be one of the tuberous sclerosis Alliance Centers of Excellence. What this means is that we're able to provide multidisciplinary care for children with tuberous sclerosis. They're going to be able to see a neurologist, a developmental pediatrician, and a renal doctor all on one day. We also are able to get all the appropriate scans and the surveillance that's needed and recommended by the Tuberous Sclerosis Alliance. It's a disorder that's complicated, and we don't want to miss the complications of tuberous sclerosis, so every child with tuberous sclerosis deserves to be seen in a Center of Excellence.