Donate Life ECHO!

My name is Breia Maddox, I am 21 years old, and I am a proud volunteer for Donate Life Kentucky and the Community Outreach Intern for Trust for Life! I’m also a University of Louisville student, member of Delta Sigma Theta Sorority, Inc. and have a loved one on the waiting list for a kidney. Through my involvement, I have worked as an advocate for organ donation in the Louisville community.

Currently, there are 115,000 men, women and children waiting for life-saving organ transplants. Almost 60% of that 115,000 are of the multicultural community. However, minorities seem to be the lowest group of registered organ donors. This discrepancy isn’t due to the fact that information about organ donation isn’t warranted to minorities, however, through various research I have found there are many myths, associated with the multicultural community and organ donation.

For example, at the age of 17, I received my official driver’s license. I was the youngest of all of my friends, but the first to receive this piece of identification, so I was super excited! Accompanying me on this trip was my grandmother, who had been to this driver’s license office several times in her life, so she was prepared! After taking my picture, I walked up to the clerk’s window while she asked me a few questions. First, she asked if I would like to donate a dollar, after asking my grandmother if it was okay, I said “yes.” After I gave the clerk the dollar, she asked if I would like to register to be an organ donor. Again, I looked at my grandmother for reassurance, but this time her response was different. I was advised that registering to be an organ donor would not be a good idea so I said “no.” After leaving the driver’s license office I was curious as to why my grandmother would let me donate a dollar, but not sign up to be a registered organ donor.

I found that my grandmother was completely against the idea of organ donation, not because of things she had learned, but of what she had heard from others. One of her reasons included, “the doctor won’t save me and they’ll take my organs.” Although, my grandmother’s words were a bit “far-fetched”, it sounded possible. Yet, I did not let my grandmother’s words prohibit me from doing my own research. Using the various resources made available by the Kentucky Organ Donor Affiliates, I learned all the information my grandmother shared with me had been false. More than anything, what concerned me was that many in the multicultural community believed this false information, and did little to no research to gauge whether it was true. In addition to the many myths associated with minorities and organ donation, I also found that many neglected the want/need to become educated on such topic until they were directly affected, my family being one of them.

A little after I received my driver’s license, my dad, a hardworking, God-fearing man asked to meet with my mom and me. My dad was expressing unusual behavior, so I knew it had to be important. My dad had been diagnosed with Polycystic Kidney Disease (PKD) and was in need of a kidney. PKD is a hereditary disease. Since I was his first born, he thought it would be appropriate for me to schedule an appointment with his doctor once I turned 18. That day, fear struck the hearts and minds of my family. Not only had we found out that my dad was in need of a kidney and would soon be put on dialysis, but also that my 18th birthday could no longer be something I looked forward to. Yet, as time went on and I saw my dad’s health begin to decline, I understood that he only wanted what was best for me. A little after my birthday I scheduled an appointment with dad’s kidney doctor.

Needless to say, the day of my appointment I was nervous. Luckily, both my mom and dad were there to help calm me down. It was a long morning full of multiple test and screenings, and after about 3 hours, my doctor had told me it would be a day or two before my results were in, and I should schedule a follow-up. Two days later, I came out of the doctor’s office, the same way I had gone in, afraid. I too had been diagnosed with PKD, but the difference between my dad and I was that I was young, and had also sought treatment early on to help manage my illness.

I highly encourage any and every one to do their own research on organ donation and transplantation. It could be you that needs a transplant or someone you know could be 1% that are actually eligible to save lives.

Stay tuned to more info/stories for Donate Life ECHO!