I know somebody with this, and it’s a horrible disease.
Cwtch is Welsh for cuddle or hug.
So Facebook's position is that this baby's condition should be considered just as "desirable" as healthy skin?
Why would any view "feel bad about themselves" upon seeing this? Wouldn't they just feel sympathy for the baby?
I donated £20 in UK funny-money to the family of this little girl. Imagine how it feels for that poor little girl to never have one of the greatest pleasures in life, a real good, hard hug.
My daughter cared for an orphan child, a female, in China who had this disease.
She told about another little boy at the orphanage who was severely crippled, who would actually do tricks that injured himself in order to make the little girl with the skin disease laugh. He didn’t care how much it hurt, as long as it made her happy.
They should try ice and witch hazel.
There are many genetic types of EB, many of them sadly are severe although the least rare is fairly mild. Research to try to correct their genetic causes is ongoing. There have been both successes and deaths from bone marrow transplantation for some types. However the combo of temporarily having no immmune system while having multiple open spontaneous wounds increases the risk beyond most BMTs. As these kids mostly start with normal immune systems, measures to change just their skin would be better. Researchers are working on that. With lots of effort and good wound care (= expensive) many of those with the most discussed severe form reach their teens or beyond so this sweetie may have time for we doctors to become smarter.
WTF, really?