Facing up to X-LHED

THE Kelly boys of Lennox Head have become the face of a rare disease.

The three boys have X-linked hypohidrotic ectodermal dysplasia, which means they can't sweat, so their bodies can overheat.

One of the visible symptoms of the condition is "shark-like" teeth.

Mum Tarja Kelly in 2007 wrote a small book on the condition so her boys could give it to their friends to explain to them why they look different.

From that, she also was inspired to set up a Facebook page to raise awareness of the condition.

A US-based pharmaceutical company, Edimer Pharmaceuticals, found Tarja's Facebook page and asked if the boys could be the face of the condition on promotional material.

The company is working on medication to counter the condition, and is expecting to conduct clinical trials this year.

The pamphlet is promoting their work, but also raising awareness among medicos about what X-LHED looks like.

Tarja said the company's work was a "major step" in allowing future generations to be treated for the condition.

Tarja has been supported in her awareness efforts by the local community.

She thanked everyone for their support.

Tarja Kelly,

Lennox mum

This is a major step in allowing future generations to be treated for the condition