Jordan’s Story

Site created on June 14, 2019

As many of you know, I suffer from severe gout and kidney stone attacks, as a result of an enzyme deficiency called Kelley-Seegmiller. I decided to start this page so friends and family can stay up to date on the latest in my medical journey. 


Although I was diagnosed with this genetic ailment at a young age, the physical repercussions didn't start to manifest until about 8 years ago. Since then, the attacks have been increasing in frequency and intensity. I have been studied and treated by Children's Mercy, Johns Hopkins, and KU Medical Center. My current doctors feel like they have done all they can to help me, and have referred me to the Mayo Clinic.

Newest Update

June 29, 2019 - I'm Home!

Journal entry by Jordan Weber —

I'm back home! Sorry about missing the other day. We were exhausted and relaxed the rest of the day. Below you will find the update concluding my first visit to the Mayo Clinic. Enjoy!
Read More of the journal titled "June 29, 2019 - I'm Home!"
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