I am not an organization, or a business, I am the mom of a child with this dreadful disorder.

Click here to meet my son Nicky, pictured here on the left, my inspiration. His big brother and my first baby, Alex, was stillborn at full term; he also suffered from EB, although we did not know it at the time, but was most likely the reason for his demise. Nicky has one of the very worse forms of EB that DO NOT improve with age, called Recessive Dystrophic. His form actually gets worse with age. His fingers and toes web and contract, he has a g-tube to supply nutrition to him, as his esophagus is basically ruined beyond repair due to all the wounds and scar tissue. He has to be covered with bandages from head to toe to prevent new wounds and protect the existing ones.
If a cure is not found, he will not reach his 30th birthday, as most patients with Nicky's form of EB succumb from skin cancer, anemia, heart failure, infection and a variety of other complications.

I started this website in 1997 hoping to inform people about EB... and, it kinda grew from there. As the story goes, Nicky's EB Info Corner went from being one single page in late 1997 to becoming EB Info World and 145 pages as of January 2004. I hope you will find this website useful, and please feel free to offer suggestions.

Brenda, a wonderful soul and also mom of a child with EB like Nicky (Jonathan, pictured on the right) helps me with the website and the mailing lists that now comprises over 200 families worldwide. Click here to visit her website and meet her family.

Please be patient with the graphics and music as they download, they are there to enhance your experience... because, to show you how devastating EB is you need to experience it, and the graphics, the music and the layout will make you never forget this website when you leave. Remember... good things come to those who wait ;-)

Make sure to bookmark us or even make us your start page by clicking below.

Sincerely,

Silvia

ENTER
for the Main Menu and Welcome Page

If you wish to donate money or to find out more about EB, we would appreciate your contacting the following national organizations which are looking for a cure.
Thank You for your concern.

I don't know of any disease that children face that causes such long term suffering. You know, you have children that have things that take their lives, but, this disease, they suffer emotionally and physically for a long long time before they either die or... well, and actually in the severe forms that's what happens.
Lynn Anderson (President of the Epidermolysis Bullosa Medical Research Foundation)

WebRings

This site is a member of WebRing. To browse visit Here.

	The Epidermolysis Bullosa SiteRing This site owned by Princess Silvia

SiteRing by Bravenet.com

West East

Ride the Health Train!

Awards

Congrats! I can not think of a better site to award then
yours. It is well done, informative and a true testament to your love
and desire to education, inform and support other families effected by EB.
Sincerely, Lisa Mills

I am honored to present you with the Facing Challenge Award for your website. The contribution you are making to the lives of many is valuable and appreciated.
Heartfelt thanks for all you efforts.
Regards, John Smith (Facing Challenge Award)

Before this date, 2247 guests visited this page since it first went up in December 1997.

~ Please support Medical Research of Epidermolysis Bullosa ~