What Are You Doing for Tuberous Sclerosis Complex Awareness Day?

May 15th is TSC Global Awareness Day!

Tuberous Sclerosis Complex (TSC) is defined as an inherited disorder that causes tumors to develop in vital organs.

One million people worldwide are living with TSC. Additionally, 50,000 people in the United States have been diagnosed with the disease. This means that about every 20 minutes a baby is born with TSC somewhere on this earth. When diagnosed as a baby, doctors will monitor them closely so they can provide interventional services.

Each person diagnosed with TSC may have different experiences.

Some people have minor symptoms, while others are more severely affected by it. Skin lesions occur in over 95% of those with TSC. Seizures are one of the main symptoms associated with it. This happens in 85% of those with TSC.

Also, intellectual disabilities are frequently related to TSC. This can include:

  • aggression
  • developmental delays
  • autism
  • hyperactivity

It’s not surprising when you learn that TSC remains the leading cause of autism and epilepsy.

Currently, there is no cure for TSC. We hope that awareness and more research will lead to a cure in the future. We have come so far, but will still have much more to learn!

Click here to read more interesting facts about TSC. And be prepared to share them on May 15th!

But that’s not all. Think of ways you can connect with your community.

  • Set up a fundraiser, in person or online, to help raise money for crucial research
  • Share this fact sheet about TSC on social media
  • Open up and tell your story about this disease

Like many rare diseases, Tuberous Sclerosis Complex needs more people to know that it exists and that if affects people every day.

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