Valen

Being diagnosed with PKD so young affected every aspect and stage of my journey. I think younger years it affected how I felt of fitting in and being like my peers, even more so than I thought it did in the moment. I look back and I always felt a bit different. I was in the nurse’s office because of cyst bleeds and pain. It’s sort of always been constant. It seems like there’s some struggle or some health hiccup. So, I think it’s so hard to fit in when you’re younger. The last thing you want to be is different. You already feel different. It’s like I remember standing in the lobby and feeling different than every other person in there and I think I just was really quiet and not confident and then had health issues, which made me feel even more different. So, that impacts friendships and dating and basically every aspect of the journey and that was just growing up. I think it was really hard to connect with people my age. Friendships were really hard. Being sick a lot, friends didn’t know how to handle it and it’s not their fault. It was really hard when I look back. I felt alone a lot. I didn’t understand what I was going through. I didn’t understand why friendships were hard. I didn’t know anybody else with PKD. And I didn’t have a visual of hope. I didn’t have someone to look to to say, oh, look at that young woman in her 20s and 30s. She has PKD and she’s happy and married and living a fulfilling life and I'm going to be okay and that’s going to be me.

When I lived with PKD as a child, there was no community, no support group, very little resources we were given as a family. And then, when I was post-transplant in my early 20s, I had the desire to become a part of that, to learn where those opportunities were, and I couldn't find them. So, I built them and that’s what’s been so amazing about this journey, just starting from building my own support group, rallying people together, helping people in my very own community come together and have a place to talk, a place of support, and then opportunities to help. And that’s where it led to me organizing events for people to be a part of, fundraising walks, and educational seminars.

It has been a beautiful journey that has just blossomed naturally, and it’s been amazing to see how it’s evolved and who I’ve connected with and what I’ve been able to accomplish over the past 17 years. And to discover my passion and purpose has been such a beautiful journey. And especially to just be my authentic self and share my story and represent those of us who have gone through challenges with PKD and organ donation has been so beautiful. It makes me excited to wake up every day and see what opportunity’s going to come my way and what opportunities I have to be able to help others.

Hope is really powerful, and I don’t think I had that when I was younger. And I think if I could go back and tell my ten-year-old self that was sitting in the patient office having my nephrologist talk to me about the disease, to tell her that she can dream big, that it’s okay, and that she has a bright and healthy future ahead of her even if it doesn’t appear like it at the moment or doesn’t feel like it at the time.