TSC Global Awareness Day is observed annually every May 15. On this day, thousands of individuals and families come together to increase awareness and share stories of hope about living with Tuberous Sclerosis Complex — TSC. This is an initiative of Tuberous Sclerosis International (TSCi), the worldwide association of Tuberous Sclerosis Complex Associations. TSC affects millions worldwide irrespective of race, ethnicity, and gender. Currently, there’s still no cure, but research is helping patients find new and better treatments.
History of TSC Global Awareness Day
Tuberous sclerosis complex or TSC is a genetic disorder in which numerous benign or non-cancerous tumors grow in many parts of the body. Its name comes from the tuber of potato-like nodules in the brain, which calcify with age and become hard or “sclerotic.” It’s caused by mutations in two genes called TSC1 and TCS2. Only one of them needs to be affected for TSC to occur. Some people inherit the disease from a parent but most develop it on their own. All races and ethnic groups of both genders can develop it.
Tumors can grow in the kidney, brain, heart, skin, and other vital organs. This can lead to health issues such as developmental problems, with symptoms varying from person to person. Almost all patients have skin abnormalities such as areas of raised and thickened skin, light-colored skin patches, and growths under the nails. It’s also common for facial ‘angiofibromas’ or tumors on the face to start in childhood. Some individuals have cortical tubers or benign growths on the outer surface of the brain. They may develop TSC-associated neuropsychiatric disorders. This includes intellectual disability, hyperactivity, psychiatric conditions, aggression, and an autism spectrum disorder. They may also have attention-deficit/hyperactivity disorder or seizures. The severity of symptoms varies. For some, they appear in the first year of life but can be so subtle and take years to develop that they often remain misdiagnosed. Others are affected so severely that it may be life-threatening.
The aspects of TSC that impact the quality of life of the patient are associated with the brain. However, some suffer only mild symptoms and lead healthy lives while working in professional settings such as doctors, researchers, lawyers, and educators.
TSC Global Awareness Day timeline
The founder of comparative pathology P.F.O. Rayer publishes a color plate of a drawing of a patient suffering from facial angiofibroma.
University of Strassburg professor Friedrich von Recklinghausen reports that a baby who died minutes after birth had cerebral sclerosis and cardiac myomas.
French neurologist Désiré-Magloire Bourneville discovers a multi-symptom disorder also known as "Bourneville's Syndrome” and would later be called TSC.
An association made up of groups that support those affected by TSC around the world is created.
TSC Global Awareness Day FAQs
Is TSC life-threatening?
Patients with TSC are at risk for issues related to the kidneys and brain that can lead to complications and even death if left untreated. As with any illness, monitoring by a doctor experienced with TSC is needed.
Is tuberous sclerosis a rare disease?
In the U.S., this rare genetic disorder affects one in 6,000 newborns. Approximately 40,000 to 80,000 people in the U.S. have it, while in Europe the number is about one in 25,000 to 1 in 11,300.
What is the life expectancy of someone with TSC?
With proper medical care by a health professional, most people can live a normal life span.
How to Observe TSC Global Awareness Day
Wherever you may be in the world, wear TSC blue. Help spread awareness about this disease that affects millions.
Contact the nearest TSC group near you and find out how you can help. Financial aid, donating blood for research, or participating in a fun run are just some of the many ways you can show your support.
Send a petition
Put pen to paper or send an email. Ask your local government to proclaim May 15 as TSC Global Awareness Day in your area.
5 Things To Do After A TSC Diagnosis
Accept your diagnosis
Acknowledging that TSC is part of your life is a powerful step that may ultimately help you to take control of your diagnosis.
Find out more about TSC
You will feel more confident in managing and treating any issues that may present themselves once you start learning more about them.
Look after your mental health
Practice self-care like writing in a journal or engaging in a favorite hobby; the more you focus on being positive, the better you’ll be able to manage your diagnosis.
Make sure you get the required care
Make sure you receive appropriate treatment and care for your condition, and you can lean on your family and friends to get the support you need.
Reach out to the TSC community
Find a community made up of people who understand first-hand how TSC can impact lives.
Why TSC Global Awareness Day is Important
It has the potential to discover new treatments
Every year, more and more research is being done on TSC. This leads to a better understanding of other diseases such as cancer, autism spectrum disorders, and epilepsy.
It recognizes the dedication of health professionals
Treating, researching, and caring for those with TSC can be challenging. That’s why we take this day to honor doctors, caregivers, and researchers who help those with TSC improve their quality of life.
It fosters understanding
TSC is a rare disorder yet it affects many people. This day gives it the focus it deserves to help it be understood and eventually cured.
TSC Global Awareness Day dates