Through the years
of running this website I've been asked questions about this
website and many people wondered about stuff and assumed the wrong
thing. I will add to this list regularly when new questions or misconceptions arise.
Here are the most common ones in an effort to educate everyone about
this website. Please note... I am posting most of these questions verbatim,
exactly as they were asked.
How did this website come about?
You may read about the history of EB Info World
on this page. To make a
long story short, EB info corner went from one single page in 1997
to what it is today gradually, as my HTML skills improved. My aim
was always to help other parents, by putting whatever info about the
condition on the net. My son has the Recessive Dystrophic form of EB
and he's the inspiration for this site and its content.
Why make this kind of website? What's the
A. When my son was born in 1996, there was nothing out there for new
parents. I could not find any info on the Internet at all. I posted on
newsgroups trying to find other parents to no avail. It wasn't until my son was
one year old that I was able to meet a few other parents at the EB Clinic at
Stanford. This website is not here for any other reason but to make sure other
parents find each other and are able to network with one another and get some
good information on how to take care of their kids.
This website also serves as a
portal to reach any and all EB organizations and websites out there. I link to
all the major EB organizations on every page of this website and in the
appropriate links page I link to personal and other organizations that support
EB patients in any way, shape or form. By visiting this site, you will be able
to find the info you need, no matter where you live or what you're looking for.
If you do not, please contact me, I am always open
Q. How can anyone
submit information to be added?
Anyone is welcome to add their article,
pictures or information to this website. This website is made by
contributions from parents or patients and they are encouraged! More
details are posted usually on the page itself, but if you have any
questions, you may contact me here.
Q. How often is
this website updated?
The website is updated once a month over a few
day's time, depending on how much time I have available. The
newsletter is posted every other month.
Q. Why aren't
certain information or news added to the newsletter or site?
There is only one of me! If I am not aware of a
certain news item I cannot post it. Sometimes even very obvious news
slip through my fingers. If you think a certain news item should be
on this website or posted on the next newsletter, you may tell me by
contacting me here.
Q. I was reading a
page and I found some inaccurate information. Can it be changed?
course! Since this entire website it's a one-woman-show, I can always use a hand
in catching mistakes here and there. Contact me here
and let me know!
One word of caution though. If the information you catch that is inaccurate or
outdated is about an EB patient or EB family per se, the only person that can
contact me to have it changed is the person that submitted the information.
So... this means that, say, you see that a patient on the Children or Adults
with EB patients has maybe passed away and you think should be moved to the
memorials... I cannot do that unless the family contacts me directly and tells
me to do so. It's their information, and I respect their
wishes. Perhaps you may want to contact the family and have them contact me about the
changes. Thanks for understanding.
Q. What can I do to
would love some help! Just contact me here and let
me know if you have any html experience or what you would like to do to help
maintain this website! THANK YOU!
Q. I've noticed
that other EB websites have blatantly copied graphics or content of
this website for their own EB website. How do you feel about that?
Doesn't that make you angry?
A. Not at all! Copying is the most sincere form of flattery, isn't
it? Plus, the more EB websites out there, the better! We need awareness,
awareness and more awareness.
Q. For what reason
articles, pictures, or anything else may be taken off the website?
Anyone may request, at any time, any information that they
submitted, to be taken off this website, and I will do so at the next monthly
If and when I take articles or pictures or
anything submitted off this website that was not requested to be taken off, I only
ever do it for MY protection. It's important for
everyone to understand that nobody
that submits information to be added to this website has to sign any
release, so I have no 'right' nor 'own' the information submitted. I
am not an organization, I am just a mom, but anyone that
might have malicious intent can and will hurt not only
me but jeopardize the very existence of this website.
A few years
ago someone wrote to the server of ebinfoworld.com and told them
that I had the picture of her daughter and her email address on the
website without HER CONSENT and the server, in turn, gave me 48
hours to take it off or they would shut my website down. Thankfully
I wasn't out of town or unable to access my website, or all my hard
work would have been ERASED!! I put nearly a decade of work on this
website and it could all vanish in a blink! Can you imagine?
since that happened, I've had to think defensively. I have no other
choice. If I am caught trusting someone I shouldn't have, this website could be
history. Therefore, if I feel anyone scares me enough into thinking they might do a similar
thing (there are lots of scary and crazy people in this world-and these
individuals usually have done something in particular that has scared me), I can and will take their
information down to protect not only myself but the existence of
Thankfully, this happens rarely. How
rarely? I can count on one hand the specific individuals that I had
to take the information they submitted off this website for the reasons explained above in the past
decade. Considering I have hundreds of pictures and info on this website about
EB families, this number is extremely small. That's because the vast majority of EB families are brilliant and some of the most
wonderful human beings you would ever hope to meet. My best friends are other
moms with children with RDEB. Taking things off this
definitely not something I want nor like to do.
I love EB families, and I only want this website to grow, and help more and more
people, not get smaller.
Everyone needs to understand that I have a duty to protect this website, and I will do so
for as long as I can. I have put too much work, blood, sweat and tears into this
website for it to be ruined by a few with malicious or vindictive intent. Hopefully someone,
somewhere, will thank me for that.