My name is Amber-lee Kate Petersen, 18 years old, and I live in South Africa. In my final year of high school, I fell incredibly ill. I experienced excruciating pain in my abdomen area. I was kept in a hospital for more than two days, and to be frank, the pain was gone, and I just wanted to leave. The results came back, and doctors told me I have ADPKD (a genetic disorder which causes cysts to grow on enlarged kidneys which eventually decreases the function of it). At that stage, I lost hope because I didn’t know what we were dealing with, and all I thought was “kidney failure” and “death.” It was scary, to say the least. This year (2019), I started the medication to maintain my blood pressure. It’s a difficult journey knowing that I am classified as a “chronic” patient. I did not handle things very well, but this is what I have learned:
- It is not our fault, our genes wanted to be different because we are different, but that makes us unique! It’s not your parent’s fault!
- It’s not a death sentence, I continue living my life, I only watch what I feed my body.
- It’s a blessing in disguise, I have learned to appreciate life at a younger age.
- It made me realize genetic counseling is really important to know exactly how everything works.
- I will probably need a kidney transplant when I’m older, but that is a battle for the future.
- A strong support system includes a psychologist. Don’t give up hope, there are millions out there fighting the same battle. YOU ARE NOT ALONE!”