Tuberous Sclerosis

Tuberous sclerosis is a condition that makes itself known throughout the entire body — in places that at first glance seem to have nothing to do with each other. In the brain, the kidneys, the heart, the skin, the lungs, the teeth, the eyes. Everywhere, small densities can form: benign growths, nodules, spots, deposits. The medical finding is usually: a change in a gene that causes cells in many places at once to begin holding on to what should actually keep flowing.

For you, if you are personally affected, this means a body that responds differently than most. Epileptic seizures, skin changes, organs that remain under observation, perhaps delayed development, perhaps moments when connecting with others feels difficult. For you, if you are accompanying a child with this condition, it means a long path full of diagnoses, check-ups, questions, and uncertainty.