“Ectodermal Dysplasia, never heard of it?
That was the same for Kate and I until a trip to the dentist at the beginning of the year. We noticed Jude’s teeth had always looked different, we googled a little, but never really thought much of it. Neither had we thought much of him complaining whenever it was a hot day, or how he couldn’t tolerate a fever when he was poorly.
From our visit to the dentist, we were referred to ENT at St Thomas’, who was certain of Ectodermal Dysplasia.
Interspersing training around work and two young children has been harder than I had perhaps thought, but it has gone well so far………..(Although my Strava recording ability perhaps needs some work!)
Margot, our German Short haired Pointer, has joined me on quite a few of my runs and always puts me to shame with a look when we get back as if to say “why are you so out of breath, is that it?”
I’m happily doing between 10-13 miles, and trying to prepare myself for the slog beyond that.
I am running in this year’s London Marathon to promote awareness of Ectodermal Dysplasia, to support the ED Society and to show Jude that anything is possible when you put your mind to it.”
This year, the London Marathon took place on Sunday 23rd April. We want to say a massive thank you to Simon for taking on this mammoth task, running 26.2 miles for #TeamED and for Jude.
The work and efforts of our ED community enables the Society to support individuals who have Ectodermal Dysplasia, like Jude.
Our help extends to their families, researchers, health and other professionals to develop and share expertise, increase awareness, understanding, and assist with the day-to-day management of ED.
Together we can spread awareness, raise much needed funds and fight for those with Ectodermal Dysplasia, to get the diagnosis, support and treatment they need.