You are here: About EB > Real life stories > Josh M
Josh M

Josh M

You would assume that Josh is like any other six year old as he smiles at you, but if you look closer you can see the dressings under his t-shirt that protect his delicate skin.

Josh has Dominant Dystrophic Epidermolysis Bullosa (DDEB), like his mum and four generations of his family.  So, his mum  Sam was prepared that he might also have the condition but remained hopeful until he woke up one morning with a tell-tale blister.  He was formally diagnosed seven months later.  Although Sam knew immediately what she was dealing with it still had a massive impact on their lives. 

Blisters can form anywhere on Josh’s body from the slightest knock or bump, which means many of his favourite sports are out of bounds, particularly football  - when his feet and toes are badly affected running is out of the question.  For this reason Josh has started playing golf with his dad as he loves being outside.  EB also affects his mouth which blisters easily, making it difficult for him to swallow many foods.  “Every morning I ask how blistered his mouth is and what he feels he can manage for breakfast,” said Sam.

Sam cares for Josh’s skin on a daily basis, a laborious and time consuming task, whereby she removes his soiled dressings and bandages, lances any new blisters that have formed, treats the damaged areas and then reapplies new dressings, followed by seamless skin wear, which protects  Josh’s skin from further damage from his own clothes.  A specialist EB Nurse (part-funded by DEBRA) is on hand to call for advice if blisters have formed in a difficult to treat area that’s not healing or his skin is particularly bad.  Sam is determined that their family life is not affected  as Josh’s older sister doesn’t have EB.  She tries to be as organised as possible, so that long dressing changes don’t eat into precious family time.  “I’m very proud of Josh as he’s so brave and deals with everything in a very gown-up, matter-of-fact way—but sometimes dressing changes are just so painful that his sister will play games with him on the tablet to try and take his mind off it,” said Sam.  Luckily Sam’s employer (the nursery Josh used to attend) is fully aware of the dramatic effects of EB and so is understanding when she needs to take time off to be with him when he is poorly or dressings have taken longer than usual.

The family adapted their bathroom to accommodate a bath so Josh can take sea salt baths which help to ease his angry skin and aid healing.  Josh has good and bad nights, it’s usually the itchiness of his skin that keeps him awake at night, making him scratch so hard that he tears his skin.  “It's credit to Josh and his positive happy nature that most people don’t realise there is anything wrong when they first meet him, his smiling face is all they see— but he has experienced people staring when his wounds are more obvious.  He takes this in his stride, either staring back or asking loudly: ‘Why is that person staring at me?’”

Sam keeps up her morale by staying in touch with a number of families she met through DEBRA’s Members’ Weekend and on Facebook.  She has spoken to DEBRA’s Community Support team for advice.  “Knowing there is always someone at the end of the phone willing to help makes the world of difference.”  The family has also benefited from time away together at the DEBRA Rockley Park holiday home, offering much needed respite and downtime away from  their daily schedule.  “My advice to other families coping with EB is to try and smile, laugh and off-load your frustrations or concerns by seeking professional advice and getting regular support.  I couldn’t cope without it.”

 

Make a difference

Make a difference

£25.00

Could pay for one hour of research to bring us closer to finding effective treatments for EB.

Donate Today

Get involved

Get involved

There are so many ways you can help DEBRA

MORE DETAILS