October 2000 – Nicky was almost 4 years old in this photo. The red, swollen eye was caused by a combination corneal abrasion/wound inside the eyelid. Recessive Dystrophic EB means not only wounds on the outside skin, but also on all mucosal membranes, which include the eyes, mouth, throat and esophagus. These wounds on the eyes are extremely painful and Nicky can go months without getting one of these abrasions, then he can get 3 or 4 in a row, each taking as long as a week to go away. We tried all sorts of things to avoid this from happening. Nicky flatly refuses any gels, creams or anything of sorts in the eye, always has. It’s only recently that he puts eye drops in (he won’t let me do it), which range from burning like hell but working great, to not burning and barely working. He decides how and when to do it and I’ve always been a huge advocate on letting him decide how much pain he can bear and what to do, it is his body afterall. When Nicky was little he would spend a day or two in the dark because it would be so painful for him to open the eye, the light alone would be excruciating. Nowadays he just toughs it out. I make sure all the windows are covered, all the lights in the house are off and the computer screen is dimmed and I give him pain meds to dull the pain. It is what it is. Nicky says this is the worse thing about his condition.
More of Nicky’s story in the book… Thank you so much for your support!!
Love & Light,