What Is EB?
I became aware of Epidermolysis Bullosa two years ago when a friend's daughter was diagnosed with this awful disease.
EB is a rare genetic connective tissue disease, and a child born with it has a deficiency of one of several proteins that anchor the skin to the body.
Without enough of these proteins, the skin tears and pulls away from the body easily, causing serious wounds and blistering.
The soft tissues inside the body can also be affected, such as the lining of the mouth, esophagus, stomach and intestines.
One in 50,000 children are affected, and some die in infancy-many do not reach their teenage years.
Imagine not being able to squeeze or cuddle your baby, and then try to imagine not being able to physically comfort your child while they are in a constant state of pain.
A gentle kiss, a rub or even holding a baby with EB in the same position for too long could cause their skin to blister and peel away to expose raw flesh.
Simple things like bathing or changing clothes can cause extreme pain.
In the mildest of cases, the blistering is confined to the hands and feet, making holding things and walking extremely painful.
The last week of October is International EB Awareness Week, where myriad events are held to raise awareness of this rare, brutal disease and to help find a cure.
Whereas, at this point, there is no cure, there is hope.
The University of Minnesota has been studying the use of stem cells to treat those with severe EB.
Through a bone marrow transplant (BMT), which is more like a blood transfusion, stem cells from a healthy donor secrete the protein that is missing in the skin of EB patients.
This substantially reduces blistering and enhances the healing of the skin.
100% of the children whose bodies have accepted the donor cells have seen amazing results.
Baby Daylon, born July 8, 2009 in California, suffered terribly for almost a year before undergoing a BMT at the University of Minnesota.
Doctors said he potentially could die before seeing his first birthday, so this procedure was his only hope.
After the successful BMT, Daylon got stronger each day and was able to crawl, play with toys and eat solid food without bleeding.
His family was able to enjoy "everyday activities" with him, such as tickling him, picking him up and dressing him in clothes without the constant fear that it would cause his skin to peel off like that of an onion.
EB is a rare genetic connective tissue disease, and a child born with it has a deficiency of one of several proteins that anchor the skin to the body.
Without enough of these proteins, the skin tears and pulls away from the body easily, causing serious wounds and blistering.
The soft tissues inside the body can also be affected, such as the lining of the mouth, esophagus, stomach and intestines.
One in 50,000 children are affected, and some die in infancy-many do not reach their teenage years.
Imagine not being able to squeeze or cuddle your baby, and then try to imagine not being able to physically comfort your child while they are in a constant state of pain.
A gentle kiss, a rub or even holding a baby with EB in the same position for too long could cause their skin to blister and peel away to expose raw flesh.
Simple things like bathing or changing clothes can cause extreme pain.
In the mildest of cases, the blistering is confined to the hands and feet, making holding things and walking extremely painful.
The last week of October is International EB Awareness Week, where myriad events are held to raise awareness of this rare, brutal disease and to help find a cure.
Whereas, at this point, there is no cure, there is hope.
The University of Minnesota has been studying the use of stem cells to treat those with severe EB.
Through a bone marrow transplant (BMT), which is more like a blood transfusion, stem cells from a healthy donor secrete the protein that is missing in the skin of EB patients.
This substantially reduces blistering and enhances the healing of the skin.
100% of the children whose bodies have accepted the donor cells have seen amazing results.
Baby Daylon, born July 8, 2009 in California, suffered terribly for almost a year before undergoing a BMT at the University of Minnesota.
Doctors said he potentially could die before seeing his first birthday, so this procedure was his only hope.
After the successful BMT, Daylon got stronger each day and was able to crawl, play with toys and eat solid food without bleeding.
His family was able to enjoy "everyday activities" with him, such as tickling him, picking him up and dressing him in clothes without the constant fear that it would cause his skin to peel off like that of an onion.
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