My name is Kimberley and my son Hayden (5 years old) has EB Symplex.
I had never heard of EB before my son was diagnosed but I had come across the Butterfly Children a few years ago and learnt a bit of information about it.
Hayden was diagnosed just before his first birthday. He was showing signs of his skin peeling on his hands, feet and knee after he started to crawl. We originally thought it may have been a something we were doing wrong as neither myself or my husband had any skin conditions.
During an appointment with Sam our EB nurse and Simone from DEBRA we learnt what EB was and how we can assist Hayden with his everyday life. We didn’t realise how many small everyday simple things needed to change – soaps/body washes (no harsh ingredients or strong smells), clothing (can rub &cause blisters), socks (need to be breathable & absorb sweat), shoes (need to not rub & be breathable), bandages (we need specials ones with less adhesive due to the fragile skin), sunscreens (no harsh ingredients), temperature (too hot and his blisters INSTANTLY), tooth brushes (extra extra soft brush due to sensitive gums), ointments (no harsh ingredients). Also the healing time for any bruises or cuts/sores.
Hayden get blisters on his hands (which look very similar to school sores) and there are days where he is upset due to the pain. We have to be careful with the types of socks and shoes we buy Hayden as well as his feet need to be able to breathe otherwise due to the sweat he can get more blisters. It is truly heartbreaking when you child asks you if his skin will get better.
The support that DEBRA and their amazing staff gives us is amazing, I’m not sure I would be able to get through all of this without them. They provide financial and emotional support for the families which we are forever grateful for!
EB is the worse disease you have never heard of – nothing is truer to this saying but we can get through with support, love and understanding of this incurable condition