Until it Happens to YOU!

The other day I was perusing the ‘EB news’ of the day and I ran across an article of a family whose insurance did not pay for bandages (shocking, I know!) and the family resorted to get their supplies from a state program for children with disabilities which picks up expenses, usually outrageous, when the family cannot afford them. When the state was taking their sweet time approving the bandages and the family ran out, they were scared and upset, and understandably so. They contacted the news station to get their help, the state got pressured to approve and within days everything was all better.  Let’s face it, until it happens to YOU, you will never quite grasp how expensive and stressful it is to have a sick child. Never.

The comments under this article were quite disconcerting, but the one that got my attention was the one that stated how the “two ‘able bodies’ parents should go to work and pay for these bandages and not rely on the taxpayers to foot the bill”.

Insert vomit sound here.

Apparently this “person” is vastly ignorant about the significant expense of bandages (thousands of dollars a month) and relies on the talking points of those who could not care less about the misfortune of others and do not bother researching what exactly this family’s needs are and what they are going through. I can’t say I am surprised. I’ve had to deal with this kind of ignorance since Nicky was born when my insurance did not pay for bandages and there was no state program that covered them either.

tumblr_m7o7r1vxvA1qcn3oqo1_500Let me explain things for those that are willing to learn more about the plight of bandages for EB patients: they are as important as Diabetes’ patients supplies and chemotherapy treatments for cancer patients. They are VITAL. It’s the only treatment available for EB wounds. Period.
Should these supplies/bandages be covered by insurance? YES!!! The reason why we purchase an Insurance Plan is so our Health Care Bills are taken care of. Families with an EB patient only have ONE treatment for their condition: cover the chronic wounds with ointments and bandages. Unfortunately these supplies are outrageously expensive, which family can afford to pay $3-10,000 a month for bandages may I ask? Who? Many families are forced to skimp on their supplies, some have to lie about their income so they can apply for social programs. No family can afford such a bill unless they are independently wealthy.  You may sign the petition if you haven’t done so already, to try to light a fire under someone’s behind to FIX THIS.

And let’s not forget that this child is not like any other child. This baby cannot just be put in daycare while the parent goes to work to earn this supposedly exorbitant amount of money to pay for bandages. If family is not nearby to help, the only two options are to either pay for a Nurse (do you know how expensive it would be to pay for a full time Nurse? Look it up!) or one of the two parents is forced to stay home, so the income is slashed in half.

How do I know all of this? Because it happened to ME. I had to quit my great job to take care of Nicky full time when he was born, and to top it off the insurance did not pay for the bandages and there were ZERO state programs in Arizona that helped me in any way, shape or form. We lost our house, our cars, I used to have to wash and reuse bandages, something highly frowned upon and extremely risky but I had no choice. None.

I know what it’s like for nobody to give a crap, because, in my case, nobody did.

But why does it take to HAPPEN TO YOU to develop the compassion to learn more about the situation, ask questions, try to come up with solutions?
Why is it perfectly OK to have this attitude to ABANDON families in need, when to no fault of their own they were unlucky enough to have a sick child? What is wrong with our society when we decide to have the attitude of  ‘it’s not my child, not my community, not my problem?’

Is it too much to ask for bandages so our children can LIVE? To some, apparently so. Shame on you.

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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A Bandage Tale

It seems as if all people see, when they come in contact with a child with EB, is gauze. Some wonder if the patient has been into an accident or a fire, others fear it’s contagious: “what happened?” is a common question tossed around, but most just look dumbfounded, not being able to formulate a thought or a question. It’s OK, we get used to it, we all get used to it, eventually. So much so I barely notice it anymore, and my son does not notice it at all. This is not something we see every day. After all, EB is rare. Very rare.
However, I wonder if people know where those bandages come from. Does that cross their mind? Do they also wonder how much they cost? How long and painful bandage changes are?

I wanted to tell a short version of my story as it relates to bandages, because I feel it needs to be told. The “no details left unsaid” version will be part of the book I am currently writing about my son’s life.

To say Bandages are expensive is the absolute understatement of the year. This is a photo of how many bandages it takes to do a whole body  change, which we do approximately every 3 days. What we are doing currently is splitting it up in three portions and do a portion of the body every night. It takes about 2 hours each night, if we were to do a whole bath/bandage change, it would take us anywhere between 6-8 hours.
As this photo shows, there are 25 Xeroforms, 8 Vaseline Gauze, 1 bag of Webril, 7 Polymem, 2 Coban, 9 4″ gauze, 2 2″ gauze, 2 1″ gauze, 1 jar of Alwyn cream, 1 pair of tubifast socks, 5 Mepilex, 2 Mepilex Heel, 2 Mepilex Transfer, and then Surgilast cut for his arms, legs & thighs, Baby Oil in case there is anything stuck, tea tree oil, Pain Medication and Miracle Mist to spray on the Polymem so it’s not so dry. Scissors and Needles of course are par for the course. I also use oils, namely Argan and Coconut oil to massage his hands with which I did not include in this list. We constantly change what we use, but this is what we use now. Cost? Astronomical… just to name a few, the Xeroform alone is over $65, it’s $35 for the Polymem, the Mepilex is $165!! Just google ‘Wound Care Supply’ store and you can figure it out. It’s thousands of dollars every week worth of bandages. What family can afford this?

The answer to the main question which is surely twirling in your head is… YES. Our insurance, thankfully, pays for his bandages right now… but I am always waiting for the shoe to drop. You see, my son is nearly 16 years old, and the insurance only started paying for his wound care supplies 3 years ago. Before then a program for children in California called CCS covered most of it for several years, although I must state that for them to cover the bandages, I had to get a letter of denial from the insurance every year. You would think it would be a simple thing to get, but there are years that I went 3 months… 3 months without bandages WAITING for this letter that the insurance kept telling me was ‘in the mail’. Infuriating? You bet. I wrote letter upon letter, sent photos upon photos to the HMO commissioner in Sacramento, and they would always write me back telling me ‘They don’t have to pay’. Our argument that bandages for Nicky were not a ‘temporary thing’ but the ONLY treatment for EB went on deaf years over and over again. The state of Arizona though, which is where Nicky was born, had no such programs, we would end up putting the bandages on credit cards, and it wasn’t only the bandages. We had co-pays out to wazoo because Nicky was always visiting a different specialist and ended up needing physical and occupational therapy twice a week each at $30 a pop… since I had to quit my job to take care of Nicky full time, we drowned. Nicky was a little over a year old when I had to declare bankruptcy.
Without credit and without bandages, after the bankruptcy we survived using bandages donated to us from other parents, who sent us their overstock, and I made them last by washing and reusing them endlessly, even things they told us could not be reused or rewashed. I would let bandages soak in bleach for a day or so, wash them, re-roll or have them dry in a clean spot etc. Then on occasion we would get a big shipment from a parent’s whose EB child had died.

The saddest thing about this whole story? It’s a US only problem. Through the Internet I have met families with EB children all over the world, and, save for those families that live in third world countries which I can’t speak to so I am not sure how they survive, supplies were never denied elsewhere. Not a single patient I have met that lives in New Zealand, Australia, Canada, the European Union or even South Africa, was ever denied bandages. I am Italian, and if Nicky had been born in Italy, he would have had all the supplies he needed from day 1, and a visiting nurse twice a week. A visiting nurse? Save for the first 4 weeks of Nicky’s life, where a nurse came by once a week, I never, ever, got a visiting nurse again… and, I’ve asked! I remember once when Nicky was 3 months old, colicky, full of wounds, I was going out of my mind. I called the pediatrician’s office in tears asking for help. Did I get it? No.

I am not one to complain, but my story needs to be told. I don’t know what the answer to this problem is, but since I know the US is hell bent in not having real Health Care, only for-profit care, Insurances need to realize or be forced to realize that bandages for an EB patient are not a “luxury” but a “necessity”.  Bandages are also not a luxury for many other conditions and situations, we’re not talking about your run of the mill scrape or bump, we’re talking about ulcers the elderly get, we’re talking about any condition that leaves the patient with a chronic wound.

If you know of any Congressman with a HEART, please refer them to the Bill below, we need all the help we can get!

HELP by signing the WOUND CARE BILL PETITION Now!!

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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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-puncured, 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 recessevely 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,

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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