Today is the international day of Rare Diseases – of course Epidermolysis Bullosa being one of them, it hits close to home. There are about 7,000 rare diseases, affecting 30 million Americans, 300 million people worldwide, but only 5% have treatments, and far fewer have cures. Rare diseases often go undiagnosed, and while a diagnosis per se does not cure the condition, the fear of the unknown is greater. Even when you do get a diagnose, sometimes it’s hard anywaysRead More →

As Nicky’s 20th Birthday came and went, I am reminded of so many moments in his life where things were dicey. When I really thought he wasn’t going to make it to his 8th birthday, let alone reach his twenties. When he was 5 years old, in fact, he took a bad fall, which denuded both his legs of skin from his knee to the ankle. His knees and ankles were already non-healing areas by then. After 2 years ofRead 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 aRead More →

I know I am beating the drum of Epidermolysis Bullosa Awareness every single day, especially on my ebinfoworld.com facebook page, but this cause is very close to my heart and it really needs everyone’s attention. There are so many conditions on this planet, many of them rare, and it’s hard to get the word out often because our voice can drown in the sea of worthy causes. The rarity of some like EB, however, makes it very unlikely that enoughRead More →

As EB Awareness week is approaching, I always hear the “numbers” of EB being floated around. One official website states the incidence of EB  is 1 out of every 20,000 births. Another official website states One in about 17,000 live births. Yet another official website states 1 in 50,000. The truth is, most likely nobody knows for “sure”. I am telling you this because I remember quite clearly a gal that was a waitress at an EB event who then went toRead More →

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. Time and patience have brought me a long way. I have a sense of peace about things that is hard to explain sometimes. I try my best to own the pain so it does not own me. I kept my personal bankruptcy, which resulted from our insurance company refusing to payRead More →

Several years ago an EB mom I used to correspond with said something pretty profound and perhaps a little controversial that I wasn’t sure if I agreed with or not. I normally am pretty clear how I stand on issues, after-all I am in my early 50s, and while I am still open to discuss matters and topics up to a certain degree, there are some things that I just will never change my mind on because my life experiences steeredRead More →

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image. Nicky loves and cherishes his hands, and wrapping them is as important to wrap for us as any other part of his body. It’s just incomprehensible to me how this horrid disorder exists and it completely changes our view of life in ways we never knew we needed to know norRead More →