Blog · December 7, 2011

You have the info… using it is YOUR choice.

When Nicky was born, 15 years ago, the Internet was not like what it is today. I know, it’s crazy to think about it, right? I used to browse ‘usenet newsgroups’ and to belong to an email group of any sort you had to send an email to a listserve to join or leave a group. There were very few websites (comparitively speaking) and not many had the internet to begin with anyway. So… it will be of little surprise when I tell you I could not find a single soul with EB or that had a child with EB. Nobody. The Doctor ‘could not tell me’ of other patients because of patient/doctor confidentiality. I was going out of my mind.
I tried to gather as much info about EB as I could, but I could find very little. I knew about the scarring. I knew about the wounds needing moisture to heal properly, I knew about the hands webbing, but not mittening. Heck, I could not even get bandages anywhere, so I resorted at padding Nicky with clothes, clothes and more clothes of any kind so he could not scratch his fragile skin so easily. Wrapping the hands? I had no idea it was needed. I didn’t know about the hands curling and ending up in a stump either. I made sure the fingers didn’t web together when they healed and I thought I was doing a good job, that’s all I knew. 

It wasn’t until a little over a year later that I actually got to meet other parents… and even one sweet RDEB woman, Kelly, that I got a wake up call. Kelly had no hands to speak of. I don’t know how she drove or how she opened anything, and I still could not tell you how she opened the folder she brought to show us some papers, but she did it. I was in awe. One other amazing lady stood in our presence, Sheri Coil. I had had a conversation with Sheri over email for the past couple of months and she promised she would show me how she wrapped the hands of the 3 RDEB children in her care. When I saw the adorable siblings, it was clear they were not a mild case, but they had pretty good hands, so I was encouraged. Lorraine was there that day too, so I got a good lesson in wrapping.

My main concern at the time is that I had no way to get the bandages I needed to wrap the fingers. Insurance flatly refused to cover ANY bandages. I had just come out of bankruptcy court, the most humiliating day of my life, because I had to pay for bandages (not a cheap item by any stretch of the imagination) out of my own pocket, and not just bandages, Nicky had Physical Therapists & Occupational Therapists every week, and many other doctors, such as ENT, Dermatologists and Pediatricians who wanted to see him ALL THE TIME. At $30 a pop, my credit cards pretty soon were at the point of no return.  Bottom Line… I had no money to buy bandages to wrap the hands.

For the next year or so, I managed. I used to cover and massage Nicky’s hands with different oils, creams, anything to keep the dryiness from webbing his hands, and I would stretch each finger for 10 seconds each day. It helped, but not quite enough. By the time he was two his right hand was so stiff he would not use it *at all*, and he’s right handed! It was clear we had to do something. Somehow we got a surgeon involved who did the surgery (and Nicky was his ‘first’ EB kid…ugh) and when we got home we, well, I, started wrapping that hand religiously just the way Sheri and Lorraine showed me. It took a while to get the hang of it, I would say several months even, but after that trial period we figured out what Nicky truly needed and we moved forward. That was the only surgery the right hand ever had, and that was in late 1998!!! 13 years ago. The wrapping did an amazing job in slowing down the webbing and contracting. We found Wal-Mart or Target carried 1in bandages and we bought a few and then washed and re-used over and over and over again. I wrote in the book (not out yet) all the crazy things we did to get bandages those days. I still cringe sometimes.

The left hand was in pretty bad shape by the time we started wrapping so we decided to do a surgery on that hand as well the following year. This surgery though… didn’t go as well as I would have liked or hoped. Because I was working full time and the lady that took care of Nicky while I worked took care of several other disabled children, I didn’t want to burden her with all the EB stuff to top it off. To make a long story short, within 6 months, this hand was gone. The fingers were encroaching the palm and they webbed that way. I was heartbroken.

For the longest time I let it go, I just could not bring myself to try again. Then Nicky started kindergarten and figured out he was different, that his hands were different. I know he was only 5 but he wanted his hand fixed, he was adimant. I vowed to do it right this time. We got Stanford involved and Dr. Ladd did an amazing job, and when she saw me wrap the hand post-surgery she felt confident I could keep it up. This was 10 years ago and while Nicky at this point in time wants his hands ‘tweaked’ a little bit, they are BOTH still in BETTER shape than they were before their last surgeries.

If you have to think about it in any way, think of it this way: wrapping the hands is somewhat like wearing braces. The wrapping literally is a form of physical therapy, because, by using slight pressure the fingers are kept apart and straight. The gauze also serves by giving the patient’s fragile skin a little more strength in pulling and pushing. There is NO loss of textile function

Because of the amazing success of the wrapping I posted instructions that came directly from Sheri and Lorraine on the website ( so other parents could try to save their children’s hands as well, and I found it disheartening how every now and again I get someone blabbing how wrapping ‘does not work’,  or how it hinders development etc. I don’t understand why people can be so against something that has been proven to work. Nobody is forcing anyone to do anything, but why the negativity? Why the lies? If it hadn’t worked for you, have you thought that perhaps you were not doing it correctly? Did you ask for help?

Look, I don’t care. Wrap, don’t wrap, it’s no skin off my back, but you have something I did not have: information and bandages. I had neither. I was clueless and bandageless. What you do with the information presented is up to you, it makes no difference to me, but for goodness sakes, don’t invent reasons why you don’t do it, it discredits and insults people who worked hard to present that information to you and tried to do something to help these children. That is worth some respect, isn’t it? Don’t want to do it? Just don’t do it and end it there. Thank You.