Women are a swirl of emotions as it is and my husband often tells me how on earth we live longer knowing how conflicted we are inside all the time. We are. We are emotional bags and this sort of experience is like a tornado of emotions. Forget tornado, how about a category 5 hurricane?

Genetics are hard to explain. Trying to make people understand how my son inherited the disorder when his parents do not have the condition is a challenge.

The reason why Recessive Dystrophic EB has the world “recessive” in the name is because this is a recessive gene, a gene that lies dormant unless it’s paired with another recessive gene, so one of them has to decide to “show up”.

I can only hope that by sharing this not so glamorous journey, the many doubted and 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.

My most feverish wish is that Nicky himself could take a break from his condition. Sometimes I wonder what Nicky would do with a weekend WITHOUT EB! I can dream, can I?

It’s not that Nicky does not WANT to do things. If pain was not an issue he would, it’s just that the pain he feels nowadays is an unsurmountable obstacle.

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