“My Voice” by Giselle Tejeda

Giselle Tejeda - Survivor

Hello my name is Giselle Tejeda, I’m 23 years old and this is my story…. I was diagnosed with an hemangioblastoma on Oct 31, 2001 in the Dominican Republic after two year trying to convince the doctors to check my brain. After two episodes, where I even lost consciousness, my mom said that even if the doctor says no, she was going to pay and force the hospital do a CT scan. When they finally did it, they discovered the mass. So, they then decided to do an MRI. When this one was complete, all of my family had to get together all the money that they had available and send my mom and I to Boston where I have an aunt who is an anesthesiologist. She helped us to get an appointment with one of the best neurosurgeons in the country.

I had my first surgery on Nov 6, 2001. The surgery lasted 17 hours and my Doctor had to stop before completion because I was bleeding too much. After the surgery, I spent 45 day in a coma and when I woke up I wasn’t able to move, talk, swallow or walk at all. I had double vision and coordination problems as well, because of this I can’t write and I have to use the computer for everything. The doctor then had to perform a tracheotomy because I was suffering from sleep apnea. I was then transfered to a rehab hospital, where after two or three months I had my second brain surgery to remove the rest of the tumor. After that, I went back to the rehab hospital where I had to undergo a lot of work. I got back my voice, not completely though because the tumor affected my vocal cords and in the middle of the two surgeries I had a stroke and bit my tongue.

Once I was discharged from the rehab hospital, I moved to my aunt’s house to live and finish high school.  High school wasn’t easy at all, but I managed with the support of my mom, my two nurses and the high school staff. After all of that, I graduated on June 5, 2005 and believe it or not I didn’t even know English when I came to the U.S. for my surgery.  Right after graduation, I started college but had to stop because I was having a terrible pain all over my body. My neurosurgeon sent me to have an MRI and discovered two tumors in my spinal cord. We decided to wait until January to have the surgery so that I could spend the holidays at home. On January 18, 2006, I had my spinal cord surgery and spent four months in rehab. A year later I had another surgery, but this time it was cancer on my left kidney; so I had another surgery to remove the cancer on September 5, 2007 and saved the kidney.

I have a syndrome called VHL, or Von Hippel-Lindau disease. It is a rare genetic disorder that affects multiple organs throughout the body. Most people inherit two normal copies of the Von Hippel-Lindau tumor suppressor gene, which produces a protein that helps regulate cellular growth. Individuals with VHL inherit a mutated or missing copy of that gene, and as a result, they are predisposed to tumors in the brain, eyes, spine, pancreas, kidneys, adrenal glands, and other areas rich in blood vessels. Growths in the kidneys can lead to cancer in the form of renal cell carcinoma, while growths elsewhere can cause a variety of problems, ranging from blindness to high blood pressure.

We are working on trying to find a cure but until that happened my only option is to scan my body every single year, keep checking for any changes and live my life and enjoy it because this can’t stop me and it won’t, that’s for sure! I still have my problems but they haven’t stop me before and there is no reason why they would now.

*For more information about VHL,  please visit www.vhl.org