PZQ has a mild form of EB. We are very lucky. Some children with disease have to be feed through a feeding tube and are covered with painful blisters at the slightest touch, even their clothing. Some die from infection from the sores. Because his case is mild, it has taken lots of research and soul searching to accept that this is what is wrong with PZQ. I have decided to accept it and try to help those who aren't so lucky.
Courntey Cox (from Friends) and her husband David Arquette have designed a jewelry line and the proceeds are going to EB research. Some one close to them suffers from this disorder. Please take the time to have a look at the jewelry http://www.satyajewelry.com/catalog/view_all.php?cPath=115_159 . It is really nice and could make any one a great Christmas gift!!
Joce
Wednesday, November 4, 2009
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2 comments:
Hello-
We share much in common. We adopted our daughter from China last February and found out she has EB as well. Her's seems to be a little bit more than mild but not awful. We knew she had a skin condition from her referral but proceeded hoping for the best but expecting the worst. I have struggled with her diagnosis, espeically because all the websites that I researched scared me. My husband and I came to the conclusion that diagnosis or not, we were going to help her live her life to the fullest and not let the EB take over her life. I love her to peices and have no regrets. Hang in there -
Hi Kim,
Please email in real life at jocelyn.firth@gmail.com. I would love to connect with you and others who have adopted from China and their kids have EB!
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