Blog · April 25, 2016

From Defensive to Educational

As I explained quite thoroughly (I hope) in my blog “Dumbing Down EB“, EB varies quite a bit. There are forms that are lethal to babies, forms that get better with age, forms that get worse with age; each form of EB has several subtypes, which can all vary wildly. This is why when other patients with similar forms of EB as my son “question” what he goes through, I get a bit… shall I say… defensive.
I think to myself: “Do they think I am lying?”
Believe me when I tell you, I never exaggerate, and to be truthful, many times my explanations only tell the tip of the iceberg.

I try, really try not to think this way, not to get upset, but alas, there it is. I know things have to change, I must change the way I perceive things and not take things so personally. I am now realizing that if even people that deal with this condition a lot of the times do not know enough about it, so I must shift my mindset from defensive to educational. What can I say? I am a work in progress.

In an effort to educate, here’s a photo of Nicky’s left arm that I took the other day:


This arm is pretty indicative of the form/subform of EB he has (RDEB-Generalized Severe) which shows wounds that are very hard to heal, and even when they do heal they leave behind red scarred skin which is extremely fragile. So fragile it takes a little nothing to re-injure.

Nicky’s whole body is NOT like that, but he has several areas on his body that are this bad. His feet for example, are mostly healed and have only few open areas, BUT the healed skin is extremely fragile and just a little pressure on them is enough to make a blood blister appear, that’s why he does not walk. He can’t. It’s not that he does not want to, it’s just too painful.

Over the years I tried not to identify Nicky’s pain with somebody else’s pain or relate to it or compare it to his. Everything an EB person goes through is their journey and theirs alone. Even within Nicky’s own body things are very different. His right arm is much better than his left arm. His right leg is immensely better than his left leg. I can’t even compare one of Nicky’s legs with the other, how am I going to compare Nicky with anyone else? Think about it… say you met a guy who had to have his leg amputated… would you try to relate to them to the time you sprained your ankle? Don’t try to relate to people, no matter how “similar” the condition. JUST LOVE THEM. And, I promise you, that’s enough.

I can only hope that by sharing this not so glamorous journey, the many doubted & neglected EB sufferers will gain medical recognition of their illness and the appropriate treatment can be found, affordable for all. Truly, this is not a pity party, my intent is to educate.

Love & Light,