"how do I know so much about EB?' That is one questions I get asked a lot. People assume I know a lot about the form of EB that we deal with but they are always surprised to find out how much I know about many of the other forms as well.
Just where do I get all my info? Well, many places actually:-)
In addition to having EB myself and caring for children with EB, I read a lot of journal articles about EB, look for info on line, but most importantly, I listen. Or in the case of the internet and email, I read. I read questions people post about EB and the answers they receive. I read the stories of others with EB that they are willing to share with the EB community; the good and the bad. I take A LOT of notes. I notice and remember (and record) the things about EB that the majority of doctors and EB medical professionals don't focus on or write articles on. Things like bleeding and raw finger nails, bad wounds on the ears and the back of the head are typical signs of the severe form of Junctional EB. Or that honey or golden fluid in blisters is very, very common in simplex. I know that groups of blisters is an indication of the dowling meara form of simplex or that webbing occurs more often in recessive dystrophic EB than in any other form. Or that airway issues can happen in all forms of EB.
I make notes of the ages when those with airway issues get a trach (or need one). I am trying to learn more about the trachs and the process of getting one so I am better able to give information for the new family I reach out to if they reach that point in their EB journey.
I learned about g-tubes and how they work/how to care for it WAY before Joey got his g-tube just from by talking to other EB families that have a child with a g-tube.
I takes notes about what are the best wound care products or ointments to use on which takes of wounds.
I signed up for "Google" alerts for the key word "epidermolysis bullosa". So anytime something published on-line with 'epidermolysis bullosa" ANYWHERE in the article I will get an email with the link to the article, web page, etc....I get links to medical journal articles; news paper articles, web pages of those with EB, blogs posts (even my own sometimes!) and even obituary notices for those with EB who has passed on. Many of the links aren't very useful or informative but I always check them out to see if its anything important.
I read the blogs of those who have/are going thru the Bone Marrow/Stem Cell transplant at the University of Minnesota. It allows be to learn more about the bone marrow/stem cell transplant process and all the good and bad that comes with it.
So there my friends is where I get all my information and knowledge from:) While I do know a lot about EB, I don't know everything about EB; but I do enjoying helping other EB families so I will keep expanding my knowledge to be able to help families even more!