One Girl is Spreading the Word on Cowden’s Syndrome
August 27, 2013
My daughter and I have a disease called Cowden’s syndrome. It is a mutation on the PTEN gene that causes tumor growth, both malignant and benign, vascular malformations and pain. In many ways the syndrome is invisible. It is also rare, with a one in 200,000 occurrence rate. That is why, since our diagnosis in the fall of 2011, my daughter Meghan (now 10) has made it a mission to raise awareness of Cowden’s syndrome and other rare diseases.
On August 20th, she will have her tenth surgery. This time she is having a soft tissue tumor removed from the palm of her hand. It took us almost 10 weeks to get connected to a surgeon who understood the realities of Cowden’s, and the pain this tumor is causing. This syndrome is relentless, but it has met its match in my tenacious daughter.
On our recent vacation to Walt Disney World in Florida, Meghan decided she wanted to teach the world a few things about Cowden’s syndrome. Instead of feeling sorry for herself, she took to speaking to cast members, characters and complete strangers about her rare disease. She was incredibly well received, as she handed out a business card that we had made before the trip.
Meghan spoke of Global Genes | RARE Project, and her connection to the symbol and logo, “Hope it’s in our genes!” She showcased her necklace with the denim ribbon and spoke of her dream that one day the denim ribbon will be just as popular as any other awareness ribbon.
When the trip was done, she had handed out close to 200 cards and educated many people. I am so proud of her and her constant efforts to raise awareness. You can read more about our story on our blog at www.beatingcowdens.com.
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