ED Community Stories

We are grateful to those in the ED community who have taken the time to reach out and write their experiences of living with ED.

We hope these stories can help bring you some comfort in that you are not alone, but also help inspire you, your family and our growing community.

Here are some helpful ones to get you started, but you can find many more in our article library.

Is there really something like this for people with thin, missing hair like me?Jaye

Fuelled by my own dental experiences to make a career out of it!

Running the London Marathon for Jude

We felt so scared and lost until we came across the ED Society

We are not just a group of people, we are a family!

Explaining ED to your child

The psychosocial impact of living with visible Differences as a teenager

My dental experience

Growing up with ED

Performing with ED

He never sheds a tear

Useful advice for School

ED doesn’t stop me!

ED and Sport

 

 

Charlotte Smith

Charlotte Smith

Bone grafts. Dental implants. Sinus lift. Crowns. Charlotte Smith has spent much of her life sitting in a dental chair. Affected by hypohidrotic ectodermal dysplasia (HED), half of her teeth didn’t develop, and the ones that did were misshapen.
family wearing blue ED society wristbands and putting all their fists together in a circle
Jen and Harrison

Jen and Harrison

Ectodermal Dysplasia runs in my family. My grandmother, father, uncle and cousin all have ED. Growing up I didn’t know what it was called, and I never realised any children I have could possibly be affected.