May Is TSC Awareness Month

Picture Courtesy of Tuberous Sclerosis (Louisiana)

Imagine being told that your child has a rare genetic condition called Tuberous Sclerosis (TSC). And then being told that it was incurable, and could cause a lifetime of physical, developmental, and neurological problems.

Then imagine what it feels like being told that you also have TSC, and that your child inherited it from you. You had lived your whole life with this condition and never knew it. This wasn't your fault. Still, you feel guilty that you passed this down to your precious little bundle of life.

This is exactly what happened to my daughter Mia and I, and I know that we are not the only ones who have lived through this scenario. At 25 years old I was diagnosed with TSC, having never even heard the term before. Mia was diagnosed at 7 months old. For the rest of our story on how we came to find we both have TSC, please click here.)

TSC is a condition that affects one of two genes. Either the TSC1 or the TSC2 genes are mutated, causing tumor growth in various parts of the body. The most commonly affected areas are the Brain, Heart, Kidneys, Lungs, Eyes, and Skin.

Some tumors can grow very large within the brain, heart, and other organs. These tumors require surgical removal. Some tumors are just there, and never grow or reduce in size.

Along with Tumor growth, a person with TSC can also develop seizures, and have cognitive developmental delays, such as Autism. There is a link between Autism and TSC, though scientists don't fully understand the relationship of the two.

Currently, there is no cure for TSC. The only assurance that a patient with TSC has is monitoring. The brain needs an image taken every two years. The heart, kidneys, lungs, etc, every year. Usually, if epilepsy is present in a patient, at least two checkups with a Neurologist are needed a year. Developmental therapies and early intervention are the only treatments for the developmental side of TSC, if they are present.

Though there is no cure now, much is being done in the way of research, and there have been some very promising results. Still, more research needs to be done to find an ultimate cure. A cure for TSC could lead to cures for disorders such as Cancer, Autism, and Epilepsy. Think of it, one cure that could possibly cure so many other devastating disorders.

Because Mia and I are both affected by TSC, and we want desperately for a cure to be found, we are participating in the TS Alliance's "Step Forward to Cure TSC Walk". If you can spare even $1.00, we would appreciate the help towards our goal of raising $1000.00. You can donate with the secure link below, and all of the donations will go directly to the TS Alliance.

Want to participate in a walk yourself? Visit the TS Alliance walk page to find a walk near you!
Our secure donation page can be found at:
http://my.e2rm.com/personalPage.aspx?registrationID=1416034#.T5b4A0Ri_-M.facebook