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The History of EB Info World: A Mother's Journey
by Silvia

The day was February 27th, 1995. The day after I was due with my baby, Alex, my first, extremely anticipated baby.
The pregnancy went so well, and I even got my wish by the baby being a boy. The crib was ready, the diapers bought, toys were surrounding the crib and I was about the happiest woman alive.

How can things go so wrong so fast?

It was on that fateful day that I was told there was no heartbeat. The baby had died. My world crashed around me, and I am still trying to make sense of it, 7 years later.
The reason why he died did not become apparent until his little brother came on the scene... 

Picture: The only 'family' picture I have of myself, holding Alex with my now ex-husband Nick.

That day was November 25, 1996. A day of incredible anticipation... I could not wait to see my baby, I was determined to hold a live baby this time, after the excruciating experience of holding my dead newborn, Alex, some 20 months earlier. My labor had been induced but it was not progressing after almost 24 hours, because the baby was posterior presentation, or, facing up.
So... there I was, wheeled into the O.R. for a c-section... I was shaking like a leaf. Little did I know what was ahead for me, a wondrous journey into knowledge and painful discovery into one very rare skin disorder called Epidermolysis Bullosa.

The first few months of Nicky's life were very hard, mostly because of the knowledge that I had no one to turn to for answers. Even the simplest questions, from how to pop blisters to bandaging, went unanswered. What would I have given to be able to ask another mom these questions! Even the condition itself was hard to understand, and no pamphlet made it sound simple, or even tried to put it in laymen's terms.

Having been on the Internet since 1992, it is not hard to imagine how I had knowledge of how to find support over the net, the same support that had been so incredibly vital to me when I lost Alex and when I was pregnant with Nicky. But now, much to my dismay, I could not find a single soul in my shoes. I posted messages on newsgroups of any kind, perused the web for some sort of help, but nothing. I felt left alone by this strange and hard to pronounce disorder.

Picture: A mere 24 hours before Nicky's appearance!

My cousin Mary did her best to help. Since she worked in the medical field she had access to much information, and she called me one day to give me all she had. It was wonderful. One of my husband's coworkers offered similar help. But aside them, no Dr could help us. The dermatologist that diagnosed Nicky did not know much about the condition, and repeatedly told us we had to go to Stanford to get our answers, and then I had difficulty convincing the insurance to let us go to Stanford to get answers. It was a nightmare.

We would not be able to go to Stanford until July, when Nicky was already 8 months old. By then we had a book full of questions, and as wonderful as it was getting our answers finally, some of them came too late. Nicky's hands looked pretty bad and were already contracting, and we were never told this was going to happen in the first place, so there was no way we could have prevented it.

One day in March 1997 my now ex-husband bought a copy of Microsoft Front Page and little did I know how much that program would totally and completely change my life. At first I made one page, then one for Alex as a memorial, then one for Nicky. On Nicky's page I wrote a little about his condition to explain to assorted relatives and friends that visited the site what this 'EB' was. As I started to add a little more info to that little section I felt it needed a 'name', so, I called it "EB information Corner", since it wasn't even a whole page, just a 'corner' of a page.
By December I had added so much information I had to spin it off into a whole page, which resided at the SAME URL (address) as the main index of this website resides at now (the geocities address). I will never, ever move it from that address because so many since the end of 1997 are linking to it, including Yahoo, and I will never want to make it hard for anyone, especially new parents, to find info about EB. I know only too well how it is like to feel so alone in this whole EB thing like I did-I do not wish that feeling on my worst of enemies.

Thanks to that page-which at the time, was only one page, I found... or, rather, many parents, found me. It was fantastic. Because I felt was important for awareness purposes, I kept adding information to the site and more pages, including the pictures of children with EB. Over the years the site has received many transformations, many additions and many, many great comments by not only parents, but the medical community, hence only giving me the strength to keep it up.

Picture: The first time I took a glance at my precious little boy! He was only about 10 minutes old...

Over the years my knowledge of making websites only grew, as my interest grew for this incredibly powerful medium. I have bought and read many books regarding making web pages and I doubt there ever will be a time where I will stop learning, there is just too much to it. As this hobby became a passion, it would become a career. There is nothing more satisfying than getting paid to do something you love to do. I believe the hallmark of a good site is the one that has content PLUS eye catching graphics to take and keep the attention and, of course, the aid of other languages, such as Javascript and CCS,  to make the site not only interactive but pleasant. I have been to many websites over the years that have content, but are boring and un-eye catching, and it has been my experience that a site of that nature is not even closely as well received as one that is-regardless of the content.

In the meantime many support groups started forming, starting in about 1998. Support groups that are alive and well today. I directed many new parents that wrote me from the website to join these support groups, which, in my view, are absolutely VITAL for new parents. I am now the owner and moderator of the biggest EB related mailing list, which is part of this website.

Picture: My precious little pumpkin... summer 2000, 3.5 years old.

At the present time my web priorities lie with EB info world and will keep up with the featured articles/moms/kids every few months. The articles will be very varied, from concrete info on EB to personal stories and such, while the parent-caregivers/patients-kids will give visitors an insight on the day to day lives of those suffering with EB. T

This world NEEDS information about EB. This world needs to know about EB. We need a cure and we need it NOW! Help us raise awareness by linking to us!

Help Spread The Word!

If you would like to link to EB Info World, you can help educate others about this devastating and life threatening skin disorder. We have a dream, we need a cure!! Knowledge is power!

Do a right click on the ribbon and choose "save as" or "save target" and then upload to your directory. Please DO NOT link to the image!

Please link the ribbon to this page:

http://www.ebinfoworld.com

Living with
Epidermolysis Bullosa
by Silvia C. & Brenda G.

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