Help Anton get to the Patient Care Conference for EB
Organized by: vanessa delgado
vanessa delgado via Crowdrise
June 25, 2014
EVENT DATE Jul 23, 2014
Anton suffers from a very rare genetic connective tissue disorder called Epidermolysis Bullosa, or EB for short. Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder that causes painful blistering of the skin and the mucous membranes.
Those affected lack the proteins that prevent the skin layers from acting independently from one another resulting in extreme fragility of the skin. This means that the slightest of touches, even a hug can cause excruciatingly painful blisters and wounds. These wounds are very susceptible to infections which can often times be lethal.
In order to protect the skin from infections and additional wounds, one must be wrapped in special bandages that do not adhere to the skin. These bandages must be changed frequently…a tedious and painful process. However since there is no cure, this is the only effective treatment.
As Anton gets older he is realizing that he is different than his Mom, Dad, Sister and Brother. He is asking more and more questions and wondering why his skin can't be like his family's skin.
His family is doing the best they can to answer his questions about his special skin but they have realized one of the best things for Anton right now is being around other people who have special skin just like him.
There is a Patient Care Conference in Nashville, Tennessee for people with Epidermolysis Bullosa from July 30th -August 2nd. At this conference Anton and his family will be able to meet with members of the medical profession who have developed expertise in particular areas of EB care. Academic researchers and organizations conducting research into treatments and most importantly they will be able to hang out with people who have special skin just like Anton.
If you are able to give this would be a huge blessing to Anton and his family.
Thank you so much for donating to this fundraiser and for sharing it with others!
For more information about the Patient Care Conference:
For updates on Anton check out his FB Page: