My name is Anastacia, and I am a 22 year old young woman. I, along with my mother and older brother, have ADPKD. My mother was diagnosed with ADPKD when she was 24 years old, shortly after I was born. Due to my mother’s adoption, she knew nothing of her family history, and the doctors have been treating her as if she were the first in our line.

I was diagnosed with ADPKD at 4 years old, after chronic bladder infections. My mother had told the doctors that she had PKD, and requested that I be tested as well. After my positive diagnosis, my mom requested that my brother also be tested. He too was diagnosed with PKD.

As a small child, going to nephrologists and getting blood work was just a regular part of my childhood. Because my mom already had PKD, my diet was always kidney-friendly, and due to my early diagnosis and kidney-positive diet, I have had very few complications.

I started taking blood pressure pills only three years ago, and recently have been facing lower back pain. Other than that, I am still able to do everything I want to do in life.

My mom however has had more complications due to her age. She presently has a cyst that is nearly half the size of one of her kidneys, and must take blood pressure pills as well.

My brother and I however still only have multiple smaller cysts over both kidneys. My brother is currently on one blood pressure pill. So far, my brother and I have not had to consider dialysis or transplantation, because our kidneys are still functioning very well.

Back in late 2018, I found out about the PKD Foundation of Canada's London PKD Patient Forum, and immediately registered myself and my mom for the event. I thoroughly enjoyed the forum; it was great to have a chance to speak to experts in the field, and see that other people in London face PKD as well.

I no longer felt alone, as I have for many years. I greatly enjoyed being able to hear other people’s questions, and being able to ask my own. My mom and I have also found that we will be able to switch to a new nephrologist who was at the forum, as our current nephrologist is going to be retiring soon.  

Currently, I am a college student, who is working on upgrading my courses so I can start the Early Childhood Education Program at Fanshawe College in the fall of 2019. I work right now with children who lack social skills or have behavioral problems, and I love every minute of it. I have a real passion for these children.

I believe it is very important for everyone who has PKD to share their stories, because it makes people feel less alone. Our stories may be slightly different, but in the end we all face the same disease. Also, by sharing our stories we have a chance to bring more awareness to PKD.

Awareness is very important to me because in my life - apart from family - no one else had ever even heard of PKD, and that made me feel even more alone. Reading other peoples stories, though, and seeing the awareness that has already taken place, has made me feel like I am a part of something larger, and then I don’t feel quite so alone. Thank you for reading my story. 

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