By Lindsey
I am a cardiac rehab nutritionist, a proud first responder’s wife, a mom of three—and someone who spent 37 years searching for a diagnosis that would finally explain what I’ve lived through my entire life.
For so long, I carried unexplained symptoms: dental issues, heat intolerance, and challenges with my nails, hair, and skin. I was born with jaw and teeth abnormalities and missing 14 permanent teeth. This meant countless doctor visits and surgeries, an estimated four to five every year from age 11 to 18.
Silence and Shame
Without a diagnosis, I carried a deep sense of shame. I hid the parts of myself that felt broken. Some family members reminded me—directly or indirectly—how expensive my medical needs were, with more than $120,000 spent out of pocket by the time I turned 18. We rarely spoke of my condition, privately or publicly, and the silence only deepened my belief that I was a burden, a mistake, and someone who should feel embarrassed.
But, I wasn’t alone. My mom was my fiercest advocate. She never let me forget that I was worthy of love, care, and dignity. Her unwavering support helped me survive some of my hardest years.
Finally, A Diagnosis
At 37, sitting in my doctor’s office, I was told I would need another seven surgeries, costing another $40,000 out of pocket. That moment pushed me to dig deeper into why. Why was I constantly facing these struggles with my teeth, skin, and health?
In May, genetic testing finally gave me answers: WNT10A ectodermal dysplasia. My diagnosis gave me more than a name. It gave me validation, understanding, and connection to a community that truly gets it. The results revealed that both of my parents are carriers. Not long after, I received heartbreaking news: all three of my children also tested positive for ectodermal dysplasia.
Finding My Community
By July 2025, I found myself back in Minneapolis, the city where I was born, attending my first National Foundation for Ectodermal Dysplasias (NFED) Family Conference. Surrounded by people who truly understood, I felt both seen and overwhelmed. Many were diagnosed young and had support from the start. I couldn’t help but feel the ache of everything I didn’t know during all those years of silence.
Through it all, my mom’s love shaped me. She taught me that even in the face of struggle, a child’s worth is never in question. She showed me what it means to advocate, to stand tall for someone who feels small, and to never stop believing in their dignity.
Following My Mother’s Lead
Now, as a mother of three children living with ectodermal dysplasia, I hold her example close. I want my kids to grow up knowing they are strong, valuable, and never defined by their condition.
This is why I share my story. Advocacy is more than awareness. It’s a promise that no one else will have to walk the road of silence, shame, or misunderstanding that I did. By raising my voice, I honor my mom, empower my children, and join a community determined to build a future of compassion, understanding, and hope.
- Lindsey is a guest blogger for the National Foundation for Ectodermal Dysplasias (NFED). She is affected by ectodermal dysplasia and lives in Texas with her husband and three children.
Have a question or comment? Contact us.