What is Tuberous Sclerosis Complex (TSC)?
Tuberous Sclerosis Complex (TSC) is a genetic disorder that can affect almost every organ in the body. It is mainly diagnosed when doctors see a tumor somewhere through CT scans or MRIs. A major sign of having TSC is having skin abnormalities, such as shagreen patches. This disease is very rare as only fifty thousand Americans and around one million people on Earth have been diagnosed with it. Two thirds of cases happen spontaneously, which means that neither of the parents have it and it develops on its own through a DNA mutation. The other third is passed on from the parent to the child. If someone has the disease, there is a fifty percent chance of passing it onto their child. There a wide range of cases with this disease, where the affects can be very mild to very bad. The brain is the most affected organ in the body and other underlying conditions come along with TSC, which is why seizures are very common with this disease. Developmental delays, Autism and intellectual disabilities are also very common.
Tuberous Sclerosis Resources
The TS alliance (www.tsalliance.org) is the main organization that funds research and support for the TS community. Their mission is to find a cure for the disease and increase the quality of life for those who have the disease. They hold events throughout the year to help families connect and raise money for the nonprofit organization.
Rare Diseases (rarediseases.org/tuberous-sclerosis) is a nonprofit organization that is ready to serve those people around the world who have rare diseases. Their support team. Their support team provides services to those and their families mentor ship, education, and research in order to help find a cure for these rare diseases once and for all.
Ninds (www.ninds.nih.gov/Tuberous-Sclerosis-Information-Page) is a business associated with the National Institutes of Health who’s mission is to research the brain and nervous system and to gain knowledge to be able to eliminate neurological diseases.