May 19th, 2019

Why you should care about Tuberous Sclerosis Complex

By Letter to the Editor on May 15, 2019.

Why should you give a damn? It’s rare, so who cares!

Hold it a second or two, and I’ll tell you.

I ask people if they’ve heard of TSC. They say, “The Shopping Channel? Sure, I’ve heard of that!”

No, it’s not that. It’s Tuberous Sclerosis Complex (TSC). There currently is no cure.

You should care because TSC is a “linchpin” disorder. That means TSC research holds an incredible amount of promise for breakthroughs in treating other more common diseases like cancer, epilepsy and even autism. One such breakthrough is the first preventive clinical trial for epilepsy, with the goal to prevent seizures from developing in newborns with TSC and improving their cognitive outcomes.

TSC is a genetic disorder that causes tumours to form in vital organs, primarily the brain, eyes, heart, kidneys, skin and lungs.  It is also the leading genetic cause of both autism and epilepsy. TSC is as common as Lou Gehrig’s (ALS) disease or cystic fibrosis (CF) but is virtually unknown by the general population. The disease affects about one in 6,000 and one million worldwide.

Many TSC cases go undiagnosed or misdiagnosed due to obscurity of the disease. Events such as TSC Global Awareness Day on May 15 are critically important to educate people about TSC to ensure individuals with the disease receive proper medical care as well as to explain the importance of TSC research and how it relates to other more common diseases throughout the world.

Today, May 15, Tuberous Sclerosis Canada (TSCST) will join TSC organizations around the world to observe the seventh annual TSC Global Awareness Day. On this day, thousands of individuals and families affected by TSC will come together to increase public awareness of the rare disease and share their stories of hope for the future. TSC Global Awareness Day is sponsored internationally by Tuberous Sclerosis Complex International (TSCi), a worldwide consortium of TSC organizations of which TSCST is a member.

I am one of six volunteer board members of TSCST spread (thinly!) across Canada. Check out our website at tscanada.ca

Ray Marco Dunmore, Alta., and Jaye Isham, Bethesda, Maryland

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