I was officially diagnosed with Dent Disease when I was around 12 years old. Previously I was mis-diagnosed with a different Kidney condition called medullary sponge kidney disease.
My wife and family are really there for me whenever I need them. Additionally, I am blessed to have many friends and colleagues who genuinely care about my well-being. As Dent Patients grow older and are not just surrounded by their family, I believe it is really important to be transparent with those that you interact with daily on your condition.
My wife and I love to travel. Over the last couple of years we’ve been to Thailand, Vietnam, Hong-Kong, France, Spain, Italy, Greece, and Hawaii. We were supposed to go to Bali in 2020, but had to cancel our plans. My hope is that once COVID-19 improves and we are able to travel again, that we can hit the road! In addition to travel, I love attending live concerts (Phish, Grateful Dead, Goose) and love going out to eat.
Having Dent Disease can be a bit strange at times for both myself and those in my life. While I know all patients are different, I truthfully have never felt sick or felt the condition held me back from doing what I want day to day. Yet, I have been on a kidney transplant list for almost 11 years and know that eventually I will likely need one. The irony of not feeling sick but being told you are sick can certainly be hard to wrap your head around at times. As a result, I’ve tried to take as proactive a role as I can in prolonging my kidney health through healthy lifestyle choices. While it is unfortunate that Dent Patients are impacted with this condition, I do believe we are in a better position than those with other chronic kidney disease to influence our outcomes.
Personally, I hope that I am able to continue to keep my kidney function stable for as long as possible. I have been fortunate for the past 10 years to have kept my function at the same level through changes in my lifestyle, specifically a vegetarian diet. While I recognize that it is likely that I will need a transplant at some point in my life, my goal is to delay this for as long as possible, assuming I am still feeling healthy overall. I also hope that the Dent Disease Foundation will help find a cure or treatment for this condition. I believe that there is a path to curing this condition and hope to see that in my lifetime for all of the young patients with Dent Disease.
Over the last 10 – 15 years I’ve had the opportunity to interact with the parents of Dent patients at our annual conferences and through phone / email. One of the things I always talk to them about is much of what I mentioned above. Since I do not have kids I cannot put myself in their shoes, but from my experience with my own parents I’ve seen how scared they can be by the news that your child has a rare disease. When I was diagnosed there was literally nobody to interact with or look to, to understand what life in the future could look like. While my story is still unfolding, I do want the parents of Dent patients to know that you will still have a very fulfilling life. They will have all of the opportunities children without a rare condition has. I’d also like to encourage parents to instill the importance of a healthy lifestyle in your children at a young age. Given the typically slow progression of this condition, you have an opportunity to help prolong your kidney health through the right lifestyle choices. Things like soda, aspirin, deodorant with metal, etc., are daily things Dent patients should avoid. We have so much information at our fingertips now. Use this info to help your child make the right choices!
As someone with Dent Disease who is no longer a child (I am 37), I want young patients to know that you will live a normal life with this condition. Growing up I played basketball, lacrosse, and soccer throughout high school. I have snowboarded for over 30 years. I was able to go to college and have the same experiences just about everyone else I knew had. After college I was able to work and have enjoyed life as a professional in the logistics industry. While everyone has a different path personally and medically, I want young patients to know that while you need to take care of yourself, this disease will not hold you back.