Tag : EB

9 posts

As per Nicky’s wishes, I am posting a few pictures I took a week ago of his left leg/foot. He’s been trying so hard to start walking again. Doctors and others have treated him as if it’s something so easy to walk, his EB team wants him to go to rehab, something he sooooo does …
I was changing Nicky’s gauze last night, once again being amazed of how much certain types of gauze helps or protects Nicky’s skin and I wished the myself of today could not only advise the me of 16 years ago, but actually hand over the supplies to do it. If I could, Nicky would for …
I just noticed that I haven’t posted any ‘wound pics’ of Nicky in a while, so I picked about 4 that I took in the past 2 months. For those that are unfamiliar with my son’s struggles, he was diagnosed at birth with EB-short for Epidermolysis Bullosa. When he was a mere month old he …
Ever since the photographer started taking photos of Nicky for her/our photo-documentary about living with EB, a lot of questions about his health have surfaced-I will try to answer them here to the best of my ability. 1. Is his condition considered ‘lethal’. Nicky was diagnosed at birth with Epidermolysis Bullosa, a biopsy was then …
I wrote this as a Facebook/MySpace/Blogspot post a couple of years ago-I tweaked it and updated it a bit but I felt this information is worth sharing and keeping ‘out there’ so to speak. There are quite a few family and friends, including some I’ve reconnected with recently, or within the past couple of years …
So, silly me… I wanted to have a ton of pre-surgery pics of Nicky’s hand, but I messed up. Nicky wanted his ‘left’ hand done so I took several photos of that hand, but then two weeks ago he changed his mind and decided to do the right one and I never did take good, …
In late October 2010, a little over a year ago, I put my heart on a sleeve and vented. My opinions are not those of a politician I chose to believe, or handed down by a parent, since my parents never talked about American Politics and I had no idea how my dad felt about …
If you’ve ever watched an episode of CSI you’ve seen gruesome stuff. You would have seen the re-enactments of a murder, how a knife or a bullett entered the victim’s body, or the doctor performing biopsies. You would have seen hearts or brains being handled, throats slashed and worms devouring a cadaver. We’ve even seen a …
The last week of October marks ‘EB Awareness Week’. It is a time to increase awareness of EB, to promote the need for a cure, and to spur advocacy on behalf of families suffering with the emotional, financial and physical burden of the disease. EB might be rare, there are approximately 600 patients with the …