About National Tuberous Sclerosis Day
Introduction
Every year on May 15th, people around the world come together to observe National Tuberous Sclerosis Day, also known as TS Global Awareness Day.
This significant day is dedicated to raising awareness about tuberous sclerosis complex (TSC), a rare genetic disorder that affects various organs, including the brain, skin, kidneys, heart, and lungs. It is an occasion to educate the public, support affected individuals and their families, and promote research efforts towards improving the lives of those impacted by this condition. National Tuberous Sclerosis Day serves as a platform for advocacy, unity, and empowerment.
Understanding Tuberous Sclerosis Complex
Tuberous sclerosis complex, often referred to as TSC, is a multisystem genetic disorder characterized by the growth of noncancerous tumors, known as hamartomas, in various organs of the body. These tumors can affect different systems, leading to a wide range of symptoms and complications. TSC is caused by mutations in either the TSC1 or TSC2 gene, which regulate cell growth and division. The condition affects both children and adults, with symptoms appearing at different stages of life.
Promoting Awareness and Education
National Tuberous Sclerosis Day provides an invaluable opportunity to increase awareness about TSC among the general public, healthcare professionals, and policymakers. By sharing accurate information, personal stories, and resources, this day helps dispel misconceptions and stigmas surrounding the condition. It encourages communities to recognize the challenges faced by individuals with TSC and the importance of providing support and understanding.
Supporting Affected Individuals and Families
Living with TSC can present significant physical, emotional, and financial challenges for individuals and their families. National Tuberous Sclerosis Day serves as a platform to connect affected individuals, families, and caregivers, providing them with a supportive network and access to resources. Support groups, online forums, and local events enable individuals to share experiences, seek guidance, and offer mutual support. By fostering a sense of community, this day reminds individuals and families that they are not alone on their journey with TSC.
Advancing Research and Treatment
National Tuberous Sclerosis Day also highlights the importance of ongoing research efforts aimed at advancing our understanding of TSC and developing new treatments. Increased awareness and funding can drive scientific discoveries, leading to improved diagnostic tools, therapies, and potential cures. It encourages collaboration between researchers, healthcare professionals, and patient advocacy groups to enhance the quality of life for individuals with TSC and their families.
Getting Involved
National Tuberous Sclerosis Day encourages everyone to get involved in raising awareness and supporting individuals with TSC. There are several ways to contribute:
- Spread the word: Use social media platforms, local events, and community gatherings to share information about TSC, its symptoms, and available resources.
- Support fundraising initiatives: Participate in fundraising activities, donate to TSC research organizations, or volunteer your time to support individuals and families affected by TSC.
- Learn about TSC: Educate yourself about tuberous sclerosis complex, its impact on individuals and families, and the latest research breakthroughs. This knowledge empowers you to be an advocate for those affected by the condition.
National Tuberous Sclerosis Day serves as a powerful reminder of the challenges faced by individuals with TSC and their families. By raising awareness, providing support, and promoting research, this day plays a vital role in improving the lives of those affected by this rare genetic disorder. Let us join hands on May 15th to stand in solidarity with individuals living with TSC and work towards a brighter future with increased understanding, better treatments, and improved support systems.
From the Tuberous Sclerosis Association, here are 15 facts about TSC which give the basics about the condition.
- Tuberous sclerosis complex (TSC) is a genetic disorder with no cure that causes non-cancerous tumors to form in vital organs.
- 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).
- 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.
- 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%.
- 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%.
- Approximately 98% of individuals experience one or more skin manifestations (such as angiofibromas) of tuberous sclerosis complex (TSC).
- Up to 60% of individuals experience kidney involvement with tuberous sclerosis complex (TSC).
- Tuberous sclerosis complex (TSC) affects men and women in equal numbers and occurs in all races and ethnic groups.
- 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.
- Scientists have identified the two genes that cause tuberous sclerosis complex (TSC), named TSC1 and TSC2.
- 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.
- Tuberous sclerosis complex (TSC) affects everyone uniquely—even identical twins.
- 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).
- 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).
- 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.
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