Thank you for visiting ebinfoworld.com!!
If you would
like to contact Silvia, please use the form below.
Please Note: I am
not an organization or a nurse, I am just a mother of a child with EB.
Please refrain from sending me emails with your 'cure' for EB and
other nonsense.
I appreciate manners and kindness. THANK YOU.
~Meet Silvia~
About EB
Epidermolysis
Bullosa.... EB. It sounds rather frightening, doesn't it? Perhaps
more disturbing is just how little is known about it. The public
and the vast majority 
of
the medical profession are equally ignorant of its causes, its nature,
and its treatment.
It is my intent,
in putting up this quite elaborate Website, to bring EB out of the
darkness into the light, where there can be awareness, evaluation,
research, and acceptance, but more than anything... SUPPORT.
Please Click Here to read the
entire story on how this website came about.
My name is Silvia
and I am the proud mommy of Nicholas
Alexander, who suffers from the Recessive Dystrophic
form of EB. I am the Webmaster & Founder of this website,
aimed at helping parents and spread awareness, and I am also the owner,
founder and moderator of the official mailing list & Message
Board.
About Nicky
Pictured below is my son Nicky holding his little brother Connor on
Christmas Day 2003. He loves his little brother, about 3.5 months
old on this picture.
Nicky is a very quiet child, he is not very active because he knows
that he can get hurt very easily. He is bandaged like a mummy on his
entire body, including his fingers to protect his existing wounds and protect his healthy skin from
getting injured in the first place. The wrapping is vital
to protect his fragile skin. Not only it covers and protects his
wounds, it covers and protects his healthy skin as well and prevents
more scarring. While many patients are not as
wrapped as Nicky is, both him and I feel this is a must for his well
being. When Nicky is
naked he will not move, he is too afraid of getting hurt,
and would not walk if I made him.
The bandages that cover his whole body protect him quite a bit from
more damage and scarring, he can even do little jumps and more,
that he could never do if he did not have that extra layer of protection.
Even so, he still cannot run or go down a slide or afford any kind
of fall.
Nicky's worse spots are his hands, feet, ankles and knees. Internally-his
mouth and esophagus are in quite bad shape. He throws up often and
bleeds daily when his esophagus needs a dilatation. Every so often
he has to have his esophagus dilatated (enlarged) otherwise
he would not be able to even swallow his own saliva.
His mouth and tongue are webbed. The g-button is his lifesaver, as swallowing is hard for him.
I feed him Nutren 1.5 during the night and then he basically drinks
what he wants during the day. He can eat some things, like cheetos,
cookies and crackers, but he has to be very careful to chew the food
extremely well so he is able to swallow it.
About Me and My
Short Story
I never heard of "Epidermolysis Bullosa" until 12 hours after my
son's birth, by then it was the next day, on November 26, 1996.
Much to my dismay, the nurses, the doctors and the perinatologists
that were taking care of my son also had never heard of EB, even
the Dermatologist that diagnosed the disorder not only did not know
much about it, and repeatedly told us we had to go to Stanford to
get our answers (that being Stanford University EB Clinic near San
Francisco), but initially didn't even tell us to pop the blisters!!!!
That is "basic 101"
for EB care, and no one knew to do it.
Unfortunately, I am not the only EB mom that has been through this
scenario, as a matter of fact, it is a very common one with every
EB newborn. Nicky was in horrible shape after one whole week of
not popping blisters (they grow to unimaginable sizes if not popped,
leaving burn-like wounds), so much so that the Dermatologist told
us he was going to die.
One nurse came
up to me in NICU one day and told me that she had actually seen
another newborn in that hospital with EB several years earlier,
but that he was in much worse shape than Nicky and died... interestingly
enough about a year later I did encounter the mom of this baby on
the Internet... it is a small world after all!!!
When Nicky was 2 weeks old we got to meet a mom who had lost a son
to Junctional-Herlitz EB at 3.5 months of age (his name was Adam)
and from seeing the devastating pictures of this beautiful little
boy, it was obvious that Nicky did not have the same form of the
condition, which was a relief to us to say the least. We had already
lost a baby, and the thought of losing another one was too devastating
to even think about. However, with Recessive Dystrophic EB, even
though it is not lethal by the first year of age as the most severe
types of Junctional, it is lethal nonetheless. If a treatment is
not found he will be lucky to reach his 30th birthday.
We were lucky
enough to find a pediatrician that knew what EB was, and had a patient
with EB some ten years earlier.
So this is how our journey of knowledge got started, and it was
a rocky road. Several
months later I started making web pages, so it became my medium
for not only finding other parents in my shoes (considering how
rare the condition is, it would have been impossible otherwise),
but spreading the knowledge about this disorder. Most of the important
info regarding Nicky's care was provided by other parents, that
is why parent to parent support is so important. I honestly believe
that if it wouldn't have been for the Internet I would still be
looking for another parent in my shoes... not to consider the fact
that Nicky would surely be in worse shape now. If you are interested
in joining support lists, click
here.
So, this is how the website was born, out of the need of spreading
knowledge and awareness of a devastating and rare condition Drs
know little about. It has become so important the website receives
emails from all over the world, and from not only parents, patients
and relatives/friends, but Doctors and Nurses too!
To learn more about me and my
family, please visit my personal website at:
http://www.silviaskingdom.com
