Nicky's EB Info World ~ Welcome to the World of Epidermolysis Bullosa

~ Welcome to the World of Epidermolysis Bullosa ~

Main Menu

- Main Page
- Message Board/Forum
- Mailing Lists
- Featured Article
- Featured Parent/Caregiver
- Featured EB Patient
- Features Archives
- The Virtual EB Quilt
- The EB Quilt Project
- Newsletter
- CHAT room
- Visitor Survey
- Classified Ads
- Inspirations for Parents
- Special Mommy Chronicles
- Steve Young and EB
- Princess Diana and EB
- Download some goodies!
- EB Info World WebRings
- The Epidermolysis Bullosa Webring
- Advertise on this site
- Links to Personal EB Websites
- Contact/Meet Silvia
- EBworld group @ MY SPACE
- Q & A about EB Info World
- Sign the Guestbook!

EB Information Corner

-FAQ About EB
-Misconceptions about EB
-All About EB Simplex
-Simplex Clinical Pictures
-All About Junctional EB
-Junctional Clinical Pictures
-All About Dystrophic EB
-Dystrophic Clinical Pictures

Caring for EB Patients

- For New Parents
- Basic 101 Care
- Caregivers Poll & Results
- ABC Wrapping
- Wrapping Hands/Arms (ABC way)
- Hand Wrapping Instructions
- Wrapping the Torso
- Physical Therapy
- EB and the Eyes
- EB and Dental Health
- Nutrition for Babies w/Dystrophic
- Diet for EB Patients
- EB Patient's favorite foods
- EB Friendly Recipes
- Helpful Tips/Hints/Products
- Hints from Grandma Shirley
- Helping Kids Cope
- Helpful Words
- Guidelines on Development
- Skin Cancer in RDEB
- Database of Patients/Parents
- Snail Mail Support Network
- CHAT w/other Patients/Parents
- Patients/Parents Helping Each Other
- Flying with EB Kids
- A Guide for Schools
- ... click here for more articles
- Caring for EB patients related links

Children with EB

- Main Page
- Simplex pg1
- Simplex pg2
- Simplex pg3
- Junctional
- Dominant Dystrophic
- Recessive Dystrophic pg1
- Recessive Dystrophic pg2
- Recessive Dystrophic pg3
- Recessive Dystrophic pg4
- Recessive Dystrophic pg5
- Recessive Dystrophic pg6
- Adults with EB

EB Resources

- U.S. Support Groups
- International Support Groups
- Links Galore

EB Memorials

- Main Page
- Simplex
- Junctional pg1
- Junctional pg2
- Junctional pg3
- Junctional pg4
- Junctional pg5
- Recessive Dystrophic pg1
- Recessive Dystrophic pg2

Help Our Cause

- Main Page
- EB Awareness Bracelets
- Advertise on this site
- Link to Us
- Free Internet Access
- Book Store (inspirational/helpful)
- Book Store (grief/loss)
- Video Store
- Gift Shop
- Poster Store
- Adopt an EB Butterfly Angel
- Jamie Gibson's CDs
- Little Lamb CD
- Your Angels Speak
- Calendar Store
- Join the EB Awareness Webring!

Click to subscribe to the
EB Info World Newsletter

Special Mommy Chronicles
by Silvia C.
Purchase Directly from the Publisher
ONLY $16.99

Subscribe to Exceptional Parent Magazine Today!

Vote For EB Info World in the
Top Caregivers Sites!

Vote For EB Info World in the
Top 100 Health Sites!

The Silver Ribbon Campaign
for the support and awareness of children with disABILITIES

I have found tons of great items on eBay for my son, anything from (new) wound care supplies, to Emu Oil at a fraction of the original cost. Click below and see what you may find! You can also use eBay to sell your used stuff you no longer need for some extra cash.

~CHAT with other Parents/Patients~

As a mother of a child with EB myself, I know I could have used the advice of a mom who had 'been there' when my son was born. Not only to get advice, but on emergency situations as well.

Below is a list of moms and patients who kindly offer their help and support that come to this website who need help ASAP or that simply need a sympathetic shoulder to cry on.
Next to their description, is their Chat nickname or #

Legend:

	IF the parent is willing to receive emails, the description will be linked to their email address.
	AOL IM Nickname Download AOL IM
	ICQ # Download ICQ
	Yahoo IM nickname Download Yahoo IM
	MSN Messenger nickname Download MSN
RDEB	Recessive Dystrophic Epidermolysis Bullosa
DDEB	Dominant Dystrophic Epidermolysis Bullosa
EBS	Epidermolysis Bullosa Simplex
JEB	Junctional Epidermolysis Bullosa

Description
Mom of elementary school age child and infant with JEB-non herlitz	JEB2Boys
Mother of 2 RDEB children that are angels in heaven	ebmrf
Mom of small toddler with RDEB	mommie2jon
Grandmother of toddler with RDEB, also mother of grown daughter with EBS. Husband also has EBS	ebnanny nanny2andrew
Mother of young toddler with EBS and also of toddler with Spina Bofida	nellieyates
Mother of teenager with mild JEB-Herlitz	dartagnan693
Mother of small toddler with EBS-Dowling Meara	Specialmum99			Specialmum99
Grandmother of elementary school age child and infant with JEB-non herlitz	Rosethings
Mother of toddler with RDEB	mom2tasha rdeb
Mother of elementary school-age RDEB child	YTa7500349
Mother of small toddler with RDEB		63675835		tblattel
Mother of teenager with RDEB	kellysmomdenise
Mother of child with ???		14259318 Dreamweaver
Mother of small toddler with DEB		53892276 Sputnik
Mother of toddler with RDEB	HuntDns
Mother of toddler and a new baby with RDEB	two ebkids
Grandmother who is raising her RDEB grandaughter				Ludie818
Mother of kindergartener with RDEB	vallesifan
EBS Patient and mother of toddler with EBS	mscmwade
Adult female with EBS-DM	jrnliste74		gespurr@hotmail.com
Adult mother with DDEB with toddler with DDEB	mstnksl			mtnksl
Young Adult (female) with RDEB	UnicornGirl1983		Cristina7483@hotmail.com	Butterfly_Unicorn_girl1983
Adult Female with severe EBS-DM	kimothee		kimothee
Mother of toddler with EBS-DM	pamwoo10		pamwoo10
EBS Patient and mother of toddler with EBS	dnini1		dnini1
Father			needy
EB Georgia Group	EBGAgroup
Mother of teenage RDEB son			Jane
Mother of toddler with eb simplex				teribethdjt
EBS patient and mother of preschool girl with EBS
Father of baby girl RDEB	qaman109
FEMALE w/RDEB AND BROTHER RDEB, BOTH ADULTS NOW
Mother of teen w/ RDEB		107879463	van_dana@hotmail.com
Mother with and child with EB
Teenage female with moderate (eb) unknown type			chelsey_macneil@hotmail.com
Mother of young son with DDEB	countryredbsqs			sandybeachks
Father and and daughter with ebs			noseheavy
Mother of baby girl with EBS DM	wisedi
Young mom of two babies that passed from jheb and a new healthy baby	Pe5A
Adult patient with Junctional EB	jjointer
Mother with young school aged child with RDEB	princessfem76
Mother of teen w/RDEB			karma
Teen boy with RDEB			Rebirth_4_Life@hotmail.com	Xyandar
Mother of RDEB patient
Female and two brothers RDEB adults
Young Adult (female) with RDEB	WinglessGirl17		trdebn@hotmail.com	pixieness1o1@yahoo.com
EBS Mother 2 sons who are EBs too				gem2527
Eb Simplex Patient. Young Adult...	Mrkrinkle222		gilligan970@hotmail.com	mrkrinkle222
Step-mom of a 22 yr. son with RDEB
EBS	HCCybervest
mum with son witheb simplex
Young adult (female) with RDEB
Adult female with EB, also a mother of 2	ILstephen
Mother of Toddler with RDEB			mbseijas@hotmail.com	mbseijas2004
ddeb young adult woman
girlfiend of man with EBS
Father of daughter with EB-simplex				ColtonWayne33
Mother of newborn baby EMS DM new mutation
shelia age 44 DDEB also my son 26 and grandson 2 months				day_dreamer_40
Mother of toddler girl with EBS	CarrieHautz76		CBSpockets@yahoo.com	CBSpockets

If you would like to add or take out your name from this list, please email me or fill out this form below. Thank you!!

Your email address:
Link email address?
Description of your name (please do not include the child's age as that changes, but be specific about FORM of EB!): ex: Mother of Toddler with RDEB
Chat name(s) and program(s) they are for: Please Note: This information is required, if none is provided, your submission will be deleted.	chat name: program: chat name: program: chat name: program: chat name: program:

EB Info World fully supports EBAN's mission

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

~ Please support Medical Research of Epidermolysis Bullosa ~

EB Info World was Created on 11/20/1997
Last Updated: March 19, 2007
© Copyright 2006 Sleeping Angel Creations & Services All Rights Reserved

Some Blinkies Courtesy of: