By Beth Orchard
I was born with a random mutation of x-linked hypohidrotic ectodermal dysplasia (XLHED). I knew since I was little I was affected by not being able to sweat, struggling with my conically-shaped teeth and lack of teeth for chewing and swallowing. I was always very pale and thin, with thin hair.
I struggled to fit in and always longed to have lots of friends but felt very shy. From the time I was little, my mom worried about my inability to sweat and being bullied so I was not able to be in lots of sports or other programs. When I had my children, I decided no matter what they were affected by, I would want them to have every opportunity to do things other kids did who could sweat and eat normally.
My son was born with XLHED and has challenges with allergies, asthma, and eczema. My daughter was born just over a year ago and does not seem affected. Advocacy became part of my life before Liam was born, especially after he came into this world at the time the Newborn XLHED Clinical Trial was running. In this trail, researchers dosed baby boys with XLHED with a protein to help their sweat glands and teeth. Although it was not as effective as we hoped, it helped pave the way for current trials which are running in Germany with great success. Our advocacy made a difference in being able to support further trials, studies, and maybe even a cure.
I went to the National Foundation for Ectodermal Dysplasias (NFED) Advocacy Day on Capitol Hill this past July to fight for dental care because my son has only six teeth. He might get some more this coming year. He will need dentures, caps, and everything else kids affected by XLHED need to chew, swallow, eat, and aesthetically look like other kids.
Will You Join Me?
I would love others to join in advocating for kids with dental needs as well as other needs including wigs, cooling vests, and other things which help not only our family but others like us. Together, we can make a difference, and maybe even impact legislation to affect nationwide change.Register as an NFED Advocate
- Beth Orchard is a guest blogger for the NFED. She volunteers as an Advocacy State Lead in Illinois for the Ensuring Lasting Smiles Act.