I have had to answer many questions since Rowan was born. So I have compiled a list of questions and answers so that maybe if you have a question there is an answer on here.
Q: Is it contagious?
A: No, EB is genetic and cannot be spread to others through contact.
Q: Will he grow out of it?
A: No, EB is for life. It doesn't go away.
Q: Will it get better?
A. Some cases get better as they get older, but they can also get worse. Every stage in life is different. When he starts to crawl we will have to wrap him to protect him and when he starts to walk we will see if his feet get more tough or break down.
Q: Are there any medicines for it?
A: No there aren't currently any medications to help with EB itself, but many people with EB must take meds for pain, use antibiotic creams and take antibiotics to fight infections. Their bodies can also become immune to antibiotics if over used too much so most care is focused in preventing infections in the wounds.
Q: Is there any treatment for it?
A: There is currently research going on to treat EB. The most severe cases can undergo a Bone Marrow transplant which introduces new genes into the body that help teach the body to make the missing connective tissue. The procedure is tricky though, as the recipient must have a match, and be healthy enough (which the more severe cases struggle with staying healthy due to sepsis and other infections) to undergo immune suppresent drugs so the body does not reject the BMT.
** Please note that I am not a professional- just a mom trying to spread the word and wisdom I have gained regarding EB.**
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