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~Contact Me~

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~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

 

 


How lovely to think that no one needs wait a moment, we can start now, start slowly changing the world!
--Anne Frank



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EB Info World was Created on 11/20/1997 
Last Updated: January 23, 2007
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