I'm a Registered Nurse, and I Didn't Even Catch It! - by Danielle Smith, TSSUS Board Member

As a registered nurse, patient advocate, and mother of a daughter (Isabella, 24) diagnosed with TS as an infant, I know firsthand how frightening and overwhelming a medical diagnosis can be.

When Isabella was two months old, my astute mom insisted on coming to the pediatrician’s office because she was concerned about swelling in my daughter’s foot. In the hospital and at a two-week check-up, she was assessed by a few pediatricians, but no one noticed significant lymphedema in her left lower leg.



I’m a registered nurse and didn’t even catch it!

At the two-month check-up, at my mom's urging, her doctor assessed and immediately said the edema was likely from a genetic disorder. Waiting for the results and then being told it was Turner syndrome (TS) was a frightening time. I searched on the web and gratefully discovered TSSUS. 

TSSUS has been a wonderful, trusted resource for us through the years. The Clinical Practice Guidelines were particularly useful for providers less familiar with TS during her journey. Her endocrinologist would not have prescribed growth hormone had we not had this resource. Even if the doctor was familiar with TS, the guidelines provided a road map for what to expect. We also participated in research studies we found through TSSUS that helped our entire family understand the potential biopsychosocial effects of TS.

Isabella is a thriving grad student today and manages her medical needs. I’m at a stage in my career where I’m ready to give back to causes I hold dear, and TSSUS was at the top of my mind. I look forward to working on the board to raise awareness and advocate for TS. Isabella and I also look forward to attended our first TSSUS Conference in July, 2024!