Every 1 in 53,000 babies born will have a rare, genetic, painful condition called Epidermolysis Bullosa. Most people won’t know about it…but you should.
You or a loved one could have been born with it. Maybe if you’re reading this you have been.
EB is a condition in which a person lacks Collagen VII the protein responsible for holding the layers of skin together. Without it, skin is extremely fragile and susceptible to blistering and peeling even from a light sheering, or rubbing, against something.
Please watch and share THIS short video to raise awareness of this devastating condition.
As a nurse I’ve seen this condition. I’ve watched a toddler cry on and off for the four hours it takes to do baths and dressing changes which have to be done either daily or every other day. Toddlers who can’t just run and jump around like other kids for fear of their skin peeling off, can’t eat anything at all because of painful blisters and wounds inside their mouth and esophagus.
Diaper changes are traumatic. Baths are traumatic. Someone new picking them up is traumatic.
Skin peeling like the photo below can happen from simply brushing up against something such as carpet.
No one should have to live with this level of pain and anxiety.
For people with EB, daily life is a challenge. They are more susceptible to infections from having open areas on their skin. They are more susceptible to blood loss resulting from bleeding, blistering wounds. Some may die in infancy due to infection. Some may die between 15-30 years old due to skin cancer. Some of the “luckier” ones will have a normal life span but still experience daily pain, painful dressing changes and multiple doctor visits on a regular basis. They most likely will have some forms of disability.
And…There. Is. No. Cure…YET.
The science and technology are here but funding is not. That’s just unacceptable.
Please consider supporting a cure for this condition, maybe in lieu of a birthday gift or instead of buying something you don’t really need. Every penny counts. If everyone did this once a year the funding would be able to CURE this condition.
I believe it is possible to do!
May you be happy and well.