Being the parent of a child with Epidermolysis Bullosa or any illness/condition is a perilous journey. The rarity of the condition makes it so we have to take any advice we receive from Doctors, Nurses and even other EB parents with a grain of salt. There are many forms of EB and each form has many subforms, so what works for one patient may not work for another. We are all dealing with something foreign and devastating in our ownRead More →

I know there are some out there who think they know what the life of an EB mom is like. Maybe you’re an EB (Epidermolysis Bullosa) mom yourself, and this is your truth, but to others, this may be a surprise, or even a revelation. Here’s what my life it’s like from my prospective. You Know You’re An EB mom When…  When you know more than the real doctors do about your child. When you consider internet friends you’ve neverRead More →

On my blog at the EB Info World website, I posted the 8 things you can do to Help Bereaved Parents, which is something I wrote for the back of the book I wrote about my son called Losing Alex, available now for the Kindle and paperback. On that note, I had written, also for the EB Info World website, a blog titled ‘Helpful Words for new EB Parents“, but I now wanted to take things a bit further. IRead More →