WHAT IS EPIDERMOLYSIS BULLOSA? Epidermolysis Bullosa is an umbrella term for inherited, genetic skin blistering conditions that vary greatly from mild to lethal. The three main forms are categorized under “simplex”, “junctional” and “dystrophic”. In recent years they also added a “kindler” form and an “autoimmune” form to the list. By “inherited” it means that some forms are dominantly inherited (the parent has it, and their child has a 50/50 chance of getting it) or the parents are “carriers”, which means they do not have the condition, and unknowingly pass it on to their offspring, who only inherits the recessive genes of both parents. Of course there are also the cases of spontaneous mutations or, even rarer, autoimmune forms, but they all blister. Blisters form in different lays of the skin in response to heat, friction, injury or rubbing, which can be either superficial or very deep depending on theRead More →

Nicky was born on November 25th, 1996 and was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB). EB is a rare genetic skin disorder, his body does not produce a vital protein that glues the layers of his skin together, hence the slightest friction causes painful blisters and wounds. His body has to be covered with special wound products and bandages to allow his wounds to heal and protect his skin from further damage. There is no treatment or cure at this time. You can help Nicky and all the children like him by helping us raise awareness! Like and share this image today. Follow these links for more information: Debra of America EB Medical Research Foundation EB Research Partnership Thank you!!! Post Views: 1,474Read More →

Last night, during a bandage change, I barely touched Nicky’s feet and he yelled in pain. I wasn’t touching a wound, mind you, I was simply “gently” feeling his skin. His feet nowadays are mostly healed, and they have been healed for sometime, they really look beautiful all in all, so I was a little perturbed. In truth, for the past several months – or years – Nicky won’t let me touch his feet at all. If there is a wound or a scab to clean or anything else he insists on cleaning it himself. I don’t mind at all, yes, please do it, ha ha. I asked him what is the matter with his feet though, and he told me they are “incredibly” sensitive. Just touching them is painful. Often he gets a blister just transferring when he puts some weight on it. Another area on his body isRead More →

As I explained quite thoroughly (I hope) in my blog “Dumbing Down EB“, EB varies quite a bit. There are forms that are lethal to babies, forms that get better with age, forms that get worse with age; each form of EB has several subtypes, which can all vary wildly. This is why when other patients with similar forms of EB as my son “question” what he goes through, I get a bit… shall I say… defensive. I think to myself: “Do they think I am lying?” Believe me when I tell you, I never exaggerate, and to be truthful, many times my explanations only tell the tip of the iceberg. I try, really try not to think this way, not to get upset, but alas, there it is. I know things have to change, I must change the way I perceive things and not take things so personally. I am nowRead More →

You know there is a major dent being made into EB Awareness when movies are now being produced to bring forth awareness! This is HUGE in my book! GIGANTIC!!! The first movie, released in 2014, was called “Butterfly Girl” and was a documentary-style movie about the real life story of Abbie Evans. More info HERE and the movie can be downloaded via iTunes, Amazon, & YouTube. There was, of course, My Flesh & Blood back in 2001, a documentary about the life of Susan Tom, which I am humbled to call a friend, and her many adopted children, 2 of which had RDEB like my son. There are two other movies in production that I am aware of. The first one is called “In Crystal Skin“, which is another documentary-style movie, and producer Robert Stillman is working on a movie about the life of Jonny Kennedy which is going to be called “Don’t Stop MeRead More →

A quick post today-I made this graphic for my ebinfoworld.com website and Facebook page as part of a bunch of Memes I did one day earlier this month and this particular one is probably the best one I’ve made, which explains fully why Awareness for Epidermolysis Bullosa is so important. I remember vividly one day over 10 years ago (probably more like 12 or 13) driving to Children Hospital Los Angeles to see a particular Doctor/Dermatologist for Nicky who, I was told, was at least ‘familiar’ with EB. Nicky had some issues, I forgot what, and I made it a point that day to drive 90 minutes to see this particular Doctor. However, on our way we encountered traffic. BAD traffic. It was so bad in fact that our 90 minute drive turned into a 3.5 hour nightmare. So, now, instead of being early for our appointment, we arrived massivelyRead More →

This past year it seems as if giant leaps have been made for EB Awareness. As Julia Roberts would say: “HUGE”! I still can’t believe it. It’s happening. Not only Awareness is happening, a cure is closer than ever. I have to pinch myself! Last year, right around this time, the book ‘Courage Under Wraps‘ by Jodi Champagne, depicting Nicky’s Life with EB was released, which led to the FOX11 coverage of it called ‘A Rare Condition‘. Because of all of this coverage, Nicky’s Facebook Page swelled with likes, words of encouragement and so much love. I honestly feel like it saved me in so many ways. So many took it upon themselves to do fundraisers for Nicky to get him a new chair and other medical and non-medical needs, Jodi and her husband helped to remake his bedroom, his dad’s work decided to commit themselves to EB Awareness andRead More →

It always humbles me when anyone is inspired, cares, and takes a special interest about the devastating condition my son was born with, Recessive Dystrophic Epidermolysis Bullosa. For so many years we felt so abandoned. Nicky always thought nobody cared. I’ve always tried to change that and for so many years I tried my best to make this little known disorder known, but many things in our lives we cannot do alone. We needed help. Jodi Champagne was the first person that wanted to make a difference for us. I met her while taking a class at the local College. She came in to speak to us and I felt a special connection immediately. It wasn’t until a while later, when she saw photos of Nicky’s wounds I posted on my blog here (Here’s one post titled ‘Under The Bandages‘ and another one of simply ‘Wound Pics‘) that she decidedRead More →