TS Global Awareness Day

May 15 is #TSGlobalDay, the day on which the international Tuberous Sclerosis Community shares information and their stories about TSC to raise awareness of this condition, which affects an estimated 1 million people worldwide.

Here are 15 facts about TSC which give the basics about the condition.

  1. Tuberous sclerosis complex (TSC) is a genetic disorder with no cure that causes non-cancerous tumors to form in vital organs.
  2. Tuberous sclerosis complex (TSC) is estimated to affect 1 in 6,000 live births. Globally, one million individuals have TSC, making it as common as cystic fibrosis or amyotrophic lateral sclerosis (ALS).
  3. Approximately ⅔of individuals diagnosed with tuberous sclerosis complex (TSC) have no family history. The remaining ⅓of individuals diagnosed with TSC have a parent who also has TSC. 
  4. If one parent is diagnosed with tuberous sclerosis complex (TSC), the probability of his or her children inheriting the disease is 50%. If parents are unaffected by TSC and have one child with TSC, the probability of having another child with TSC is around 1-2%.
  5. Tuberous sclerosis complex (TSC) is the leading genetic cause of both epilepsy and autism spectrum disorders. Seizures occur in approximately 85% of individuals with TSC and intellectual disabilities are found in 45-60%. 
  6. Approximately 98% of individuals experience one or more skin manifestations (such as angiofibromas) of tuberous sclerosis complex (TSC). 
  7. Up to 60% of individuals experience kidney involvement with tuberous sclerosis complex (TSC).
  8. Tuberous sclerosis complex (TSC) affects men and women in equal numbers and occurs in all races and ethnic groups. 
  9. Tuberous sclerosis complex (TSC) affects everyone differently; some may have mild symptoms while others are severely impacted. TSC symptoms often vary over a person’s lifetime—someone who has few childhood symptoms may still have severe health problems later in life.  
  10. Scientists have identified the two genes that cause tuberous sclerosis complex (TSC), named TSC1 and TSC2. 
  11. Tuberous sclerosis complex (TSC) may be diagnosed prenatally or very soon after birth if rhabdomyomas (a type of heart tumor) are detected during routine ultrasounds during pregnancy.
  12. Tuberous sclerosis complex (TSC) affects everyone uniquely—even identical twins. 
  13. Facial growths generally appear by age five (sometimes they are first mistaken for acne) and affect approximately 90% of individuals with tuberous sclerosis complex (TSC). 
  14. Rapamycin and its derivatives (such as everolimus), called "mTOR inhibitors," are sometimes used to treat tumors and/or epilepsy caused by tuberous sclerosis complex (TSC).
  15. TSC is a “linchpin” disease--one that can potentially unlock new treatments to a wide array of disorders. Because of its diverse symptoms, research into tuberous sclerosis complex (TSC) is leading to a better understanding of other common diseases, such as cancer, autism spectrum disorders, and epilepsy. 
To support us in our our fight against TSC please visit our Fundraising pages and help in any way you can. Thank you.