Pay It Forward
Giving back to our community is the greatest gift of all. The National Event Partnership has partnered with the Tuberous Sclerosis Alliance also known as TS Alliance. For each planner that attends any of the National Events Partnership Showcase, we will make a donation to the TS Alliance. Doesn’t it feel good to know that your attendance is helping somone with TSC – we think so.
What is TSC?
First described in the 1880s by French neurologist Désiré-Magloire Bourneville, tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. However, many people with TSC are living independent, healthy lives and enjoying challenging professions such as doctors, lawyers, educators and researchers. The incidence and severity of the various aspects of TSC can vary widely between individuals—even between identical twins.
How Many People Have TSC?
At least two children born each day will have tuberous sclerosis complex. Current estimates place tuberous sclerosis complex-affected births at one in 6,000. Nearly 1 million people worldwide are estimated to have TSC, with approximately 50,000 in the United States. Many cases may remain undiagnosed for years or decades due to the relative obscurity of the disease and the mild form symptoms may take in some people.
How Does a Person Develop TSC?
Tuberous sclerosis complex is a genetic disease that can be inherited from one parent with TSC or can result from a spontaneous genetic mutation. Children have a 50 percent chance of inheriting TSC if one of their parents has this condition. At this point, only one-third of TSC cases are known to be inherited. The other two-thirds result from a spontaneous and unpredictable mutation occurring during conception or very early development of the human embryo.
This desiese is rare and affects many family every day, especially children. We have had the pleasure of meeting Sawyer Spotts, who was touch by TSC about a year ago. Here is his story.
“Meet our youngest son, Sawyer. He is a sweet, determined, smart and extremely affectionate little boy. At 16 months, Sawyer began experiencing brief staring spells (which were later diagnosed as partial complex seizures). As his parents, we knew something was “off” and brought him to Children’s hospital. They performed multiple tests that revealed over a dozen benign brain tumors and ultimately led to a diagnosis of Tuberous Sclerosis Complex. Hearing that diagnosis left us confused, terrified, angry, speechless and lost. We didn’t know anything about TSC or what it meant for Sawyer’s future.”