By Beth Orchard

I was born with x-linked hypohidrotic ectodermal dysplasia (XLHED) because of a random mutation. I was not formally diagnosed until my late twenties, early thirties. Once I got married and started talking about wanting children was when I began volunteering with the National Foundation for Ectodermal Dysplasias (NFED).

My family – husband Steve, with our son and daughter

The NFED was a bridge between the two worlds I felt I lived in: one where I could pass as someone who looked unaffected because I had all my hair and most of my teeth and the one where I knew the issues I faced as a person affected by XLHED. My hope and desire was to connect with people who understood what it was like to be affected and then bridge the gap for others who did not understand it or needed support because they were also affected.

Our son, Liam

Volunteering for Research

My desire to volunteer really hit home when my son, Liam, was born in 2015 with XLHED. We enrolled him in the Newborn XLHED Clinical Trial and he spent three weeks in St. Louis Children’s Hospital neonatal intensive care unit (NICU) for observation. This huge sacrifice changed me and it changed my family.

It was not an easy decision, but we did it in the name of research and finding a possible cure. This is what propelled me forward to want to help the NFED raise awareness of the issues around XLHED and advocate for change.

Volunteering to Fundraise

In October, 2016, I held my first Beat the Heat walk for NFED at a park near my house. Most money was raised online but we had a few brave souls show up and walk the park in the pouring rain. We raised over $2,000 and it was then I realized the power of building a plan, executing it, and bringing people together for a cause. I knew then I wanted to keep volunteering at Family Conferences, become a state advocate for dental coverage, and raise awareness of what both I and my son face regarding our condition.

Use Your Gifts

One of the things I like to tell people about volunteering is to use your gifts. Use your talents, and put those to good use advocating for yourself, your family, and others. I have been writing stories and blogs to share online since my son was born.

I am now writing a book where I plan to share more of my personal journey with ectodermal dysplasia because it is time to release the story for others to connect with, to help them realize they are not alone.

The key to advocacy and volunteering is to plug into the place you are most passionate.

To create change, we need everyone’s unique voice to rise above the din of complacent attitudes that suggest one person cannot effect change. If you think back to Rosa Parks, Martin Luther King, Jr. or many other individuals who gave their lives for a cause, it is not above any one person to think they, too, can make a huge difference.

If you know me, you know I am very stubborn and I do not give up until I get what I set my mind to do. I dreamt of living in London and I did. I dreamt of living in Australia, seeing the Great Barrier Reef and traveling to Ayer’s Rock/Uluru. I did just that and more, in spite of my condition of not sweating even when temperatures got very hot Down Under.

I will not give up volunteering with the NFED until we find coverage for Liam’s teeth and the many others affected by missing teeth.

I volunteer because my son is affected but so are many others across the world. I now have an infant daughter who has not been tested for the gene but regardless of the outcome, she, too, will be part of our “advocacy team,” because her input will be just as important in the fight for dental coverage. We are excited to partner with the NFED family to create lasting change.

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