I cling to the hope that someday in the not so distant future I will know what it means to see my son being free from the daily suffering he endures. In the meantime the only thing I can do is continue to spread awareness. I am not a millionaire nor a scientist. I can’t donate oodles of money for research and I also do not have either the skill nor the expertise to research how to actually find a cure for EB, so I must support those that do and continue my quest in getting this disorder known.
The truth of the matter is that with enough money a cure will be found. There are now enough scientists that are trying all sorts of ways to treat EB if not cure it, and every parent of a child with his awful condition wants to be the first to get it, most especially the parents of those forms of EB that are time sensitive. Those that have either Recessive Dystrophic EB or Junctional Herlitz EB bear an unimaginable cross of knowing that not only they have to constantly suffer, but eventually the condition will take their life, many times sooner rather than later.
This is why I sit here sharing these gruesome photos, not because I want to, but because EB needs to be seen. I am not doing this for any ego trip whatsoever. I know that as long as Nicky is suffering, I will do everything in my power to help change things. All I want is not go to my son’s funeral, is all. I want to see the day where my son knows what it means to be free from suffering.
My son has the Recessive Dystrophic Form of Epidermolysis Bullosa, the “Generalized Severe” subform.
This is Nicky’s right knee. It hasn’t healed in a dozen years or so-possibly more. I just do not recall seeing it healed in a very, very long time. Because the wound is very defined, meaning the edges are clear, it means it’s not inflamed nor badly infected. As the redder areas around the wound show, it has been much bigger at some point. The “red” areas around the wound are also basically scar tissue, the wear and tear on the skin from the endless cycle of wound/healing is damaging to the skin to the point that skin cancer, mainly SCC (Squamous Cell Carcinoma) is a big threat. SCC is a very aggressive skin cancer for RDEB patients. Anyone can get SCC but it’s normally a slow moving cancer because the Collagen VII keeps it at bay. Unfortunately with RDEB the body is missing this protein so it can move extremely fast and be deadly. You can bet I keep a close eye on Nicky’s wounds and try so hard to get them to heal because the word “cancer” scares the hell out of me.
This is the same right knee again, just seen from the front rather than the side.
This is the left knee just before I put the cream on it. I took these photos just this past Sunday. I was able to get this knee 100% healed after I started using Cannabis and I am looking into more stuff to heal, but right now it looks better than normal and certainly better than the right knee, just scarred. The problem with the scarred areas is that they are very fragile. There is a big difference in how much pressure I can put on areas of his skin that have never been wounded and areas like this. A little “nothing” creates a new blister on the knee, while I can put much more pressure on, say, his back without anything happening. He can itch on some areas forever and nothing will happen, while if he itches on badly scarred areas it’s basically a foregone conclusion that he WILL get a blister no matter how gentle he tries to be.
I know forever I’ve been bashed over and over again for “over-wrapping” Nicky the way I do, but if he can’t hurt himself and cannot create new blisters and we are able to keep new wounds to a minimum he’s not only in less pain overall, but with less wounds the threat of skin cancer and deadly infections decrease ten-fold. Nicky himself knows this and has learned over the years that padding is a good thing. He even tells me lately “You did not wrap enough here” and I laugh. We are most definitely on the same page. And it goes to say that if he wasn’t on-board I couldn’t even do it. He hates any bandages on his chest for example and refuses to be wrapped there, so I don’t. I wish I could to avoid the little wounds he gets there on and off, but alas, it’s his body and he’s in charge.
I want to thank everyone for their support, it goes without saying that without the interest and the help of so many of you and the willingness to share the struggles a cure will never be found. Let’s hope it’s found in time for Nicky.
Love & Light,