The History of EB Info World: A Mother's
The day was
February 27th, 1995. The day after I was due with my baby, Alex, my first,
extremely anticipated baby.
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
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.
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.
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...
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!
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| EB Info World was Created on 11/20/1997 - Background Ribbon Graphic by Dominic
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