Hi everyone!
My name is Tina, I'm 18 years old, and this summer, half of my shoulder blade will be removed in an intense and scary surgery on July 14th.
I have a disease called Multiple Hereditary Exostosis (MHE), which causes my skeletal structures to grow hundreds of painful tumors. I am fortunate that my tumors are benign for now, but that isn't guaranteed forever. The particular type of sarcoma I'm susceptible to (chondrosarcoma) has no effective chemotherapy treatments. Unfortunately, multiple tumors are growing in dangerous places on my scapula, so my surgeon is removing the bottom 3 inches of the bone to prevent the tumors from becoming chondrosarcoma.
As an incoming freshman in college, I've been battling to juggle my studies with my disease for as long as I can remember. In the past 9 years, I've had 8 extensive surgeries and 17 tumors removed from my body. I have persevered through countless doctors' appointments and treatment plans. As many of my PCS family know, I will attend Tulane on a full scholarship this fall. I plan to continue my service with PCS throughout college because research is important.
Research gives kids like me a more secure future. It's not okay that there's no treatment for our disease. We need to do better!
My sister and I have co-captained this team for the last decade to raise money for sarcoma research. Unfortunately, I can't make it to the race in-person this year because I will be competing at debate nationals, but my sister and mother will both be there, and you can likely find them around registration. Let's raise some money and blast sarcoma!
Much love <3,
- Tina
