ED Community Stories - The ED Society

Real Stories from Our ED Community

We’re honoured to share the powerful and personal stories of individuals and families living with Ectodermal Dysplasia.

Each experience is unique, yet together they reflect the strength, resilience, and spirit of our incredible community.

By opening up about their journeys — the highs, the challenges, and everything in between — these families help others feel seen, understood, and less alone.

We hope these stories offer comfort, inspiration, and a reminder that support is always here.

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.

Read my story

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.

Read our story

Leonie

My Implant journey

To me, it’s more than just a smile. This was one of the best decisions I have ever made; and even though it was a really long process I have no regrets. Don’t get me wrong I was so grateful to have been given dentures at 5 years old, however I always struggled with them - not always physically, but mentally.

Read My Story

Rachael

Discovering ED Together

From having never heard of this rare condition, to a family with four diagnosed, and more on the pathway, in just four years. It hasn’t been easy, but with the help of family, medical teams, and The ED Society, they’re not alone.

Read My Story

Lola

Shining on the World Stage

Lola is an incredibly talented 13-year-old dancer with a passion for performing. She recently auditioned for the Dance World Cup 2025 and has been lucky enough to qualify, representing Scotland in the finals in Burgos, Spain, July 2025.

Read My Story

Is there really something like this for people with thin, missing hair like me? – Jaye (ED Society’s Family Liaison)

London Marathon 2019 – Stuart Atkiss

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

The Student Voice Prize – Beacon for Rare Diseases

The Student Voice Prize is an annual, international essay competition that raises the profile of rare diseases within the medical field, particularly with medical students, nurses and scientists who may have never come across rare diseases in their training. Students are then paired with someone within a patient support group.

In 2024, the ED Society were lucky to be paired with Krish Gupta in the Patient Pairing Scheme. Krish is currently in Year 4 studying Medicine at the University of Leeds, and we are happy to share with you his essay submission for the SVP – “Ectodermal Dysplasia: The Silent Symphony of Resilience and Identity”.