Info
RxTuberous Sclerosis

Tuberous sclerosis (TOO-buh-rus skluh-ROH-sus) is a genetic disorder that can cause noncancerous tumors to form in many parts of the body. With TSC, tumors can develop in the brain, eyes, kidneys, heart, lungs, bones, or skin.

Web Content

• Kids Health – Tuberous Sclerosis Complex

  Nemours created this page for parents to give them an introduction to TSC. It gives information on signs & symptoms, causes, diagnosis, and treatment.

  kidshealth.org/en/parents/tuberous-sclerosis.html?ref=search

• Tuberous Sclerosis Canada - Living with TSC

  Tuberous Sclerosis Canada is a voluntary, non-profit, charitable organization. It works to provide awareness and support for individuals with TSC and their families. An introduction to living with TSC can be found on their page.

  tscanada.ca/patients-caregivers/living-with-tsc/

• Tuberous Sclerosis Complex International - What is TSC

  Tuberous Sclerosis Complex International (TSCi) is a consortium of organizations that support individuals with TSC around the world. Their page explains what tuberous sclerosis is, how it is diagnosed, and what to expect after a diagnosis.

  tscinternational.org/what-is-tsc/

• NORD

  The National Organization of Rare Disorders has an article about tuberous sclerosis. It includes in depth information about symptoms, diagnosis, treatments, and refers to other helpful organizations.

  rarediseases.org/rare-diseases/tuberous-sclerosis/

• GARD

  Genetic and Rare Diseases Information Center provides access to current, reliable, and easy to understand articles about rare or genetic diseases, including tuberous sclerosis.

  rarediseases.info.nih.gov/diseases/7830/tuberous-sclerosis

• Ophranet

  Orphanet provides high-quality information on rare diseases and works to ensure equal access to knowledge. Use the search bar to find an article about TSC.

  orpha.net/consor/cgi-bin/index.php?lng=EN

Book List

These resources are available to borrow in the Family Library. You can also check with your local library to see if they are available.

You can download, print, and share this PDF, or our Destiny Collection List.

• 

  My Life with TSC

  Evan Moss (2014)

  Written and illustrated by 10-year-old Evan Moss, My Life With TSC shares his story. He details the daily challenges his faces living with tuberous sclerosis complex.

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  Princess Katie the Brave : A Story About Living With TS

  Jennifer Flinn (2014)

  A young happy princess named Katie has TSC. Sometimes she feels different because she goes to the doctor and hospital more often than the other princes and princesses in her kingdom. As Princess Katie learns more about her condition she meets other princes and princesses who also have TSC. She soon discovers that she is not alone and that she doesn't have to feel weird just because she has special needs.

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  My Life and Thoughts With Tuberous Sclerosis Complex : Fight for a Cure

  Robin Marie Hudson (2015)

  This book was written by a young woman living with tuberous sclerosis complex. Diagnosed at 7 months, she has faced many struggles including brain surgery. This story focuses on her life and how she has coped with TSC.

Contributors

Thank you to our friends from the Clinical & Metabolic Genetics Program the Alberta Children's Hospital for their contributions.

Current as of: January 12, 2024