About Tuberous sclerosis association
The Tuberous Sclerosis Association: Providing Support and Advocacy for Individuals and Families Affected by TSC
The Tuberous Sclerosis Association (TSA) is a UK-based charity that provides support, information, and advocacy for individuals and families affected by tuberous sclerosis complex (TSC). The TSA was founded in 1977 by a group of parents who were frustrated with the lack of information and support available to them when their children were diagnosed with TSC. Since then, the TSA has grown into a thriving community of individuals, families, healthcare professionals, researchers, and supporters who are dedicated to improving the lives of those affected by this rare genetic condition.
What is Tuberous Sclerosis Complex?
Tuberous sclerosis complex (TSC) is a rare genetic condition that affects approximately 1 in 6,000 people worldwide. It causes benign tumors to grow in various organs throughout the body, including the brain, heart, kidneys, lungs, skin, eyes, and bones. These tumors can cause a wide range of symptoms depending on their location and size. Some common symptoms include seizures or epilepsy; developmental delays or intellectual disability; behavioral problems; skin abnormalities such as facial angiofibromas or shagreen patches; kidney problems such as cysts or tumors; lung problems such as lymphangioleiomyomatosis (LAM); cardiac rhabdomyomas; dental enamel pits.
While there is currently no cure for TSC , there are treatments available that can help manage its symptoms. These may include medications to control seizures or behavior issues , surgery to remove tumors , or other interventions depending on individual needs.
How Does TSA Help?
The TSA provides vital support services for individuals with TSC and their families throughout the UK . This includes:
- A helpline staffed by trained advisers who can provide information about all aspects of living with TSC
- Online resources including fact sheets, newsletters, and a forum where individuals and families can connect with each other
- Regional support groups that meet regularly to provide peer support and social opportunities
- Advocacy services to help individuals with TSC access the care and support they need from healthcare providers, schools, or other organizations
- Research funding to advance our understanding of TSC and develop new treatments
The TSA is also actively involved in advocacy efforts at the national level to raise awareness about TSC among policymakers, healthcare professionals, and the general public. This includes lobbying for better access to care for individuals with TSC , promoting research into new treatments , and working with other organizations to improve outcomes for those affected by rare diseases.
Why Choose TSA?
There are many reasons why individuals and families affected by TSC choose to turn to the TSA for support. Some of these include:
- Expertise: The TSA has been providing support services for over 40 years , which means we have a wealth of knowledge about all aspects of living with TSC.
- Community: The TSA provides a welcoming community where individuals can connect with others who understand what they are going through.
- Advocacy: The TSA is committed to advocating on behalf of those affected by TSC at all levels – from individual cases up through national policy initiatives.
- Research: The TSA funds research into new treatments for TSC so that we can continue improving outcomes for those affected by this condition.
Conclusion
If you or someone you love has been diagnosed with tuberous sclerosis complex (TSC), know that you are not alone. The Tuberous Sclerosis Association is here to provide information, support, advocacy ,and hope . Our dedicated advisers and active community are here for you every step of the way as you navigate life with this rare genetic condition. Contact us today if you would like more information about how we can help!
tuberous-sclerosis.org
