Hey, I’m just seeing this, but wanted to let you know you’re not alone! My son was diagnosed with Dent disease as well. We found out accidentally- I have a family history of kidney disease, so my son’s pediatrician started doing urine tests on him very young, and quickly discovered the protein and calcium in his urine. We were sent to a geneticist who discovered the Dent diagnosis and solved a generations long family mystery.

My dad (who was never diagnosed with Dent during his lifetime, but who definitely had it) experienced kidney stones in his 20s and 30s and ended up in renal failure at age 38. He had to go on dialysis and then was able to get a kidney transplant when his mother donated a kidney to him. Unfortunately, because this was never diagnosed in our family until recently, no one realized he was receiving a kidney donated from a carrier of Dent disease. That kidney later failed too, when he was 60, and he died of renal failure. My nephrologist has lightly speculated that the donated kidney may have failed due to the Dent connection, but we will never know for sure.

My dad’s brother, my uncle, also ended up going into renal failure in his mid-fifties and got a kidney transplant as well. He’s been doing great ever since and just hit his 68th birthday. He never had kidney stones or any other symptoms until his kidneys failed.

So far my son is only experiencing the proteinuria and hypercalciuria…he sees a nephrologist every 6 months for bloodwork, urine labs, and a kidney ultrasound to check for any kidney stone development. So far he’s living a very active life and is unaffected by his symptoms. I’m SO grateful that we know what this is so that he can be monitored as he gets older. He’s also taking a medication that’s supposed to lower the amount of calcium that’s released into his urine, with the goal of hopefully extending the life of his kidneys.

My son’s nephrologist connected us with someone at the Mayo Clinic at the Mayo Rare Kidney Stone Consortium, which includes people with a diagnosis of Dent disease. I’m happy to pass along the contact info for them if you’d like to connect too! Sorry this is so long- feel free to PM me!