Blog · June 16, 2014

New CaringBridge Post & Blister Musings

logo-caringbridge-stacked-facebookJust a quick note – I just updated Nicky’s blog at CaringBridge… I talk about his recent struggles, results from his biopsy and camp stuff. Here’s the link!

On another note, I recently came across this BLOG I wrote for the EB Info World website a couple of years ago and I thought it really belonged here, so I am reposting it.

Many blessings to everyone and keep reaching for the stars!









Help! I have a blister!


I couldn’t help but be amused the other day while visiting Target by one of these little packets containing Hydrocolloid Bandages.
I was amused by two reasons:

1. Obviously amusing is the fact that I would need to get hundreds just for one week’s worth of bandage changes for Nicky. Ha Ha

2. Weirdly amusing is the fact that every doctor will tell you that unless you have EB, blisters should go un-punctured, hence not needing any bandages to begin with, which reminded me of a time several years ago when I was foolish enough to pop my own blister. Oy!

As a side note, EB blisters need to be punctured as they will spread if left intact, in case you did not know.

I’ve experienced the need for these bandages first hand on one hot July day in 1998 on a trip with my parents and Nicky to Bassano Del Grappa, a beautiful city by the river Brenta in the Veneto region, near Vicenza, Italy. I made the mistake of wearing a new pair of shoes, nothing fancy, just a pair of white canvas shoes. My mom and I have never been able to walk much on a new pair of shoes (probably why I love boots & sandals so much, I never had a problem with those), and that day I came home with quite a few blisters on both my feet. I hadn’t seen blisters on my feet in a dozen years, so I was quite shocked, and having seen and punctured Nicky’s blisters now for nearly 2 years, instinctively I immediately grabbed a needle and popped the ones on the first foot-only to realize… WAIT! I am not supposed to pop MY blisters!! Oops.
Those punctured blisters’s wounds lasted at least a week and they were VERY, VERY painful, while the un-punctured ones hardly hurt at all and were gone in a couple of days. I will never make that mistake again!!!

Incidentally a couple of years ago a study revealed that parents (read:carriers) of a child with RDEB or JEB (forms of EB that are recessively inherited) get blisters 25% easier than the general population. I always knew I was the carrier, and I always suspected I inherited the recessive gene from my mom because it’s very obvious with the naked eye that I have my dad’s skin. If my dad’s skin is the dominant gene, then my recessive skin gene has to be from my mom. Since my mom has the same problem with new shoes and such, it’s quite evident she is a carrier as well. We tried to go back further, we surmise that since my mom had her mom’s skin, the ‘EB’ gene must come from her dad, my grandpa Martino Lencia, which I find intriguing since his father (my great-grandfather’s) branch of the family tree is the most obscure of them all, and the one I am going to investigate further when I go to Italy this summer. The Lencia last name is extremely rare, I’ve only found a handful of people living today with that last name, so it’s all very bizarre.

Oh well, it matters little where the EB comes from, as it comes from his dad as well, what’s important is that a treatment is found SOON. Children are dying all the time, and the damage of 15 years of EB has taken a huge toll on Nicky.

Please keep praying for every child suffering from EB and that the Doctors and Scientists will find a cure to end this horrible disorder.

Hugs & Blessings,