At the PKD Foundation, we strive to give all types of patient experiences a voice in the community. Recently, an almost un-heard of story came to us from our Orlando Chapter Education Coordinator Brittnee Boyd, and we reached out her to learn more about her story:
My name is Brittnee Boyd and I’m 20 years old. My PKD diagnosis came as a surprise in October 2009 when I had an ultrasound done for unrelated pain coming from my appendix. At the time, it was something that I didn’t even think about. All the medical professionals involved made it sound like it was something I wouldn’t need to worry about for another 30 years. As a result, my family and I ignored it as much as we could for a little over two years, only attending one nephrology appointment a year. I had low blood pressure and my kidney function was normal each time, so it felt like no big deal. Then, in my freshman year of high school, a lot changed. I started having intense pain in my back that I later learned were cyst ruptures and infections. While looking for answers, my mother found the PKD Foundation.
Through the Foundation, we learned about the two types of PKD and wondered what type I had. We have no family history of PKD on either side of my family. My mother’s pregnancy with me showed symptoms of ARPKD, but after I was born, scans showed I was healthy. Half of the doctors say I have ADPKD while the other half says ARPKD. Last year my family was offered free genetic testing through The Mayo Clinic. Though I haven’t received any news yet, I know that the final verdict will not change much for me. I am anxious to know the results, but I believe in my heart that it will not change how I feel. I know I have PKD and that is something I will live with for the rest of my life.
PKD has come with great challenges, but it has also given me an unimaginable strength I didn’t even know I had. My advice for anyone suffering the effects of PKD would be to reach out. Having met so many people from all across the country with PKD, it has taught me that not a single one of us is alone. Although it is tough, we can help each other through it together.
To learn more about the two types of PKD, watch our video.
Do you have a unique PKD story? Share it with us at Voices of PKD!