Having a child diagnosed with something as bizarre and as rare as EB means living in a world that does not fit the reality of our world at large, even within the EB community. In my life I have struggled, worked hard, I’ve been poor and had bad luck, but this is something that most people could relate to, I never truly felt alone. I knew there were a ton of people out there that worked hard and long hours and still struggled, lived paycheck to paycheck, could not afford things… Even after I lost Alex at full term, I could still find other parents that lost babies. Perhaps the circumstances were different, but the end result was identical. We all had to bury our babies. There was no going back or doing things differently, hope was lost. It was over. We shared our journeys and helped each other through our grief.
Dealing with EB however, is a completely different animal. I took a lot of advice that turned out to be great, and a lot that actually hurt my son greatly. There is so much trial and error because not only the various forms of EB are very different from one another, but there are so many different genetic mutations that can cause each form of EB, which in turn can effect each form in many significant ways. While similar, two RDEB patients can have very different realities. The whole thing is just mind-boggling.
I was told once by a RDEB patient for example, when Nicky was little, that healing wounds with moisture was detrimental and made her skin more fragile. Scar tissue on the other hand was much harder to injure, and she told me how she could do crazy things with her thickly scarred hands that she could never do without the scars. I thought that was great that this worked for her, but while that might have been her truth, I never found this to be true for Nicky. Believe me, I wish it were! I mean, who wants to spend hours every day changing bandages? I sure don’t. I can only speak for Nicky of course, because that’s all I know, but once areas got damaged and they healed without moisture, they would scar, and that scar tissue was weaker skin, not tougher in his case, which would re-blister that much easier. Eventually, as each new wound went through the cycle of healing, it took longer and longer to heal and then it did not heal at all. That’s why Nicky in the future would have wounds that took forever to heal, and some that never did. He never got these thickly scarred areas that were tougher to get a wound on. Ever.
This is what makes EB one of those conditions whereas one patients swears by one thing, it does not work at all for another, and why there is so much contention on support groups at times. One’s reality can be quite different than another. Sometimes the differences are more acute than the similarities, fueled by everyone’s different personalities. Another woman with RDEB for example, was horrified of Nicky getting a biopsy recently and how that was the most traumatic event in her life. She called the Doctors “cruel”. When I asked Nicky about it, he said that yes, it sucked, but most “traumatic”? Hardly. He further told me how he would never, ever consider his Doctors cruel in a million years. When I told her this, she told me that Nicky was lying to me to make me feel better. Huh? When I asked Nicky if he lied to me he looked at me and laughed. “Really? Mom, I would never lie to you about that”.
There is this false notion that when you get a specific EB diagnosis then everyone with that specific diagnosis is the same. I’ve encountered this so much especially recently that has become quite hurtful. I’ve written about this quite extensively, how everyone is different, but time and time again, so many want to judge our journey, and if something is worse with my son than them (say, Nicky can’t walk but they can) it means we’re doing something wrong. I cannot express how hurtful this is. It is very hard, especially for Nicky, to be discriminated against and for me to see my child treated like a zoo animal from those that should only be offering kindness, understanding and acceptance.
I am just thankful that this is the exception and not the rule. The vast majority of my friends within the EB community are kind and considerate, and I appreciate this more than I can express.
Just as every person is different with their talents and gifts, so are those with Epidermolysis Bullosa. Everyone is different. Respect. Listen. Care.
Love and Light,