My journey towards getting diagnosed with autosomal dominant polycystic kidney disease (ADPKD) didn’t begin with me—it began with my mom. And because of her, I’ve discovered strength within myself to take charge of my own health and raise awareness for our ADPKD community.
Like so many others who live with chronic illnesses, when I first started experiencing symptoms, I didn’t realize that what I felt wasn’t normal. When I was a teenager, I started getting frequent urinary tract infections (UTIs), which sometimes turned into kidney infections. Because UTIs are fairly common, it didn’t alarm me. Then in college, I started noticing that after I played volleyball, I’d get a very distinct pain in my back, along my side. Looking back, I can see how strange it was that I was having these pains despite having such a healthy lifestyle. At the time I figured this is just how my body is.
But everything changed when my mom was diagnosed with ADPKD, which is an inherited disorder that causes benign, fluid-filled cysts to form on the kidneys. Imagine your kidneys covered in water balloons, fighting for space inside your ribcage. ADPKD is the most common form of PKD (other types include autosomal recessive PKD and acquired cystic kidney disease) and affects ~1 in every 400 to 1,000 people.1 It’s also the most common kidney disorder passed down through family members.2 Symptoms include abdominal and back pain, fatigue, UTIs, high blood pressure, blood in urine, and kidney stones. In severe cases, kidney failure may occur—in fact, it’s the fourth leading cause of kidney failure and more than 50 percent of people with ADPKD can develop kidney failure by age 50, which can lead to dialysis or a transplant.3 Some of my mom’s outward symptoms were fairly mild, so by the time she was diagnosed, the doctors were already discussing preparing her for dialysis.
When I heard about my mom’s diagnosis, I was in complete shock because I had no idea she had been coping with a chronic illness. I think perhaps she didn’t want anyone to worry about her and didn’t realize how serious the diagnosis is. My mother is the most courageous, resilient and optimistic person I know, and it truly saddened me to know she had been dealing with these symptoms all on her own. I wanted to do all I could to help her, so I started doing my own research on ADPKD. As I learned more, one fact stuck out to me—the disorder can be passed down from parents to children. A person with ADPKD, like my mom, has a 50 percent chance of passing it on to each of their children. When I looked at lists of symptoms and realized how many I had been experiencing for years, I realized that it wouldn’t be surprising if I had ADPKD, too.
The day I went to get an ultrasound on my kidneys to find out if I had ADPKD, I was distraught with feelings of anxiety. Of course, I knew there was a high likelihood I had it, but I couldn’t help hoping maybe I was wrong. During the entire procedure, I tried reading the technician’s facial expressions, searching for any indication of what they might be seeing. But they wouldn’t tell me anything.
Finally, the day before my 26th birthday, I got a call from my doctor who confirmed that I did in fact have ADPKD, just like my mom. Hearing those words was surreal. Worries ran through my head: Would I end up needing dialysis and a kidney transplant like my mom? How would my husband and I plan our family, knowing I could pass it on to our kids? But once the news started to sink in, I knew I had to take accountability for this. ADPKD isn’t only affecting me because my mom has it, it’s affecting me because I have it too. So, I thought to myself, let’s get to work trying to figure out how I can manage it in the best way possible.
I believe the most powerful way I took control of my health was educating myself and getting screened after I learned about my mom’s diagnosis. Because my mom moved to the U.S. many years ago from the Philippines, she didn’t know if any of her other family members had ADPKD. So I understand why she might not have investigated her symptoms sooner or why she didn’t realize that she could have passed her condition on to her children. I know for some people, “ignorance is bliss” when it comes to seeking out a diagnosis, especially if they think there’s nothing they can do to manage their condition.
But for me personally, I wanted to know if I had ADPKD as soon as my mom knew she had it. Then I could start researching, connect to others in the community, adjust my lifestyle, and do whatever I could to help slow the progression of this disease, if this is even possible. It gave me a head start—if I’m going to have this for the rest of my life and I know that kidney failure could be the end result if I don’t manage it properly, what can I do throughout my life to help avoid that?
Six years later, I’m still dealing with occasional UTIs and a pain in my side when I play sports. But I’ve been working on adjusting my water and sodium intake, diet, and decreasing my stress levels, all of which has helped me manage my symptoms and hopefully, my kidney function, only time will tell. I’ve also found so much strength in advocating for the ADPKD community. I volunteer as a social media coordinator for my local PKD Foundation chapter, and every year I help run a volleyball tournament to fundraise for ADPKD. I’ve also been able to partner with Sanofi Genzyme to raise awareness of ADPKD and World Kidney Day. Putting myself out there as an advocate and influencer in the community reminds me how much support is available for those of us with ADPKD. We’re not alone.
I’m so grateful to my mom for taking charge of her health and in doing so, allowing me to learn about my own diagnosis and educate myself about how to stay as healthy as possible and understand what treatment options are out there. I’d encourage anyone living with ADPKD to be your own advocate, and never hesitate to investigate unexplained symptoms with your doctor/specialist. If something doesn’t feel right, find out why. My mom’s diagnosis sparked that passion in me.
To learn more about ADPKD, visit the ISN World Kidney Fund.
By: Ashley White
Ashley was not compensated to share her story.
1. Torres, V. E. (2010). Treatment Strategies and Clinical Trial Design in ADPKD. Advances in Chronic Kidney Disease, 17(2), 190–204. doi: 10.1053/j.ackd.2010.01.006
2. What is ADPKD? PKD International. Retrieved from: https://pkdinternational.org/what-is-pkd/adpkd. Accessed March 9, 2020.
3. What is ADPKD? (n.d.). Retrieved from: https://pkdcure.org/what-is-pkd/adpkd/. Accessed March 9, 2020.