Hello, my name is Nicole and I am almost 13 years old. I was diagnosed with Hypohidrotic Ectodermal Dysplasia (HED) when I was 2 ½. It’s been an evolving learning experience all along the way. Primarily, my teeth and my sweat glands are affected. I also needed a procedure called, frenectomy to fix my tongue-tie. We waited for half of my teeth to erupt before beginning orthodontic work. Through my orthodontist, we learned that my airways were very narrow so the first step was to ensure I received an expander to help widen my upper jaw which would also widen my airways. That really helped improve my breathing and sleep. I visit my orthodontist every 5-6 weeks because there’s a lot of movement with my teeth. Soon we’ll be able to add additional braces and bring my teeth together. Once that happens, I can get prosthetic teeth to fill in the spaces where I do not have any teeth.

I also suffered from chronic nose bleeds and recently had nasal cauterization to help prevent them from reoccurring.

From a very early age, I learned to really pay attention to my body for early signals that I might be overheating. It’s a lot easier for me to stay at a good temperature than it is for me to cool after overheating. After overheating, I tend to be tired and sometimes I get headaches. Eczema is also a side effect. Despite this, I don’t let this prevent me from playing sports, running around with my friends and having fun.

One thing I take pride in is advocating for the Ensuring Lasting Smiles Act. I don’t let my condition define what I can and cannot do. Instead, I take this as an opportunity to be a voice for myself and for everyone else with congenital anomalies.

I’m a happy kid who is entering the 8th grade this fall with lots of good friends. I enjoy boating with my family, swimming in the pool, playing soccer and playing the viola. I really think my work with the NFED and advocacy with my mom has helped me find my voice which enables me to help myself and others.

This is my third family conference and I’ve traveled to DC in-person for Advocacy Day and participated in the last three virtual Advocacy Days. This experience has connected me with so many amazing members of the NFED family. I consider the NFED family as my extended family and I can’t wait to see everyone in Saint Louis!