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

~ Welcome to the World of Epidermolysis Bullosa ~

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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
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- Nutrition for Babies w/Dystrophic
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- 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

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EB Memorials

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- Simplex
- Junctional pg1
- Junctional pg2
- Junctional pg3
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- Recessive Dystrophic pg1
- Recessive Dystrophic pg2

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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.

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~Parents/Patients Helping Each Other~

EB is a rare condition, most Drs do not even know what it is, and very few have treated patients, hence rarely can they tell a parent how they can care for their newborn. Even when they can, they often refer the parents to another parent! When Nicky was born the Dermatologist brought in another mom to 'show me' how it's done! Even a Dr. at Stanford referred Sheri Coil to me so that I could learn how to wrap Nicky! Parents and Patients truly need each other.

It's also important to remember that different forms of EB require very much different care, because the wounds are different. This is why this page started. The information is all volunteer from willing parents/patients, who do not need to reveal their identity. However, an email address is REQUIRED so that I know the entry is legit and not a joke... Yes, I do get bogus entries all the time. Sad, ain't it?

The only advice I truly have regarding using information regarding medicines is to contact the patient's Dr. first to make sure there is no harmful side effects that might be okay for one patient, but not another, and also to be aware of drug interactions.

If you've already filled out this form and you simply need to EDIT some of the information, please send me an email with the subject: EDIT INFO ON PHP page and on the body of the message include the first name of the patient and form of EB, with the information do edit, such as:
Nicholas Z., RDEB
Itching Products: Benadryl - please chance to Allegra

Thank you!

-->>To move on to the Parents/Patients Helping Each Other Section now, please follow the links below:
(Coming just as soon as they are submitted!)
Simplex :: Junctional :: Dystrophic

Please Note: This form is VERY involved and might take you some time to fill out. Gather all your supplies in their packaging (so you know the name and reorder #) and please put some time aside to do it when you know you won't be disturbed. We are very appreciative of you taking the time to fill this out, God Bless you! Thank you!!

Who is filling out this form? (REQUIRED)
Email address: (REQUIRED)
Would you like your email to be linked so new parents or patients can ask you more questions? (REQUIRED)
Patient's first Name w/last Initial & Age full name not necessary-age is important because what a 5 year old uses might not be what an adult or a baby would need: (REQUIRED)
Patient's country of Residence this is necessary because some products that you might list below might not be available in a different country: (REQUIRED)
Form of EB (REQUIRED) 1. Please be as specific as possible if you know it-for example, if Dystrophic, please state Recessive Dystrophic-Hallopeau Siemens. Write in as much information as you're willing to share about involvement. 2. Please also state if you feel the form of EB the patient has is rather mild, medium or severe. 3. Please DO NOT fill out this form if you DO NOT KNOW the Form of EB because it defeats the purpose of this page):
Products used for Itching if needed, one per line Please also specify how well they work and specific dosage if different than prescribed, and why:
Products used for BM (Laxatives) if needed, one per line Please also specify how well they work and specific dosage if different than prescribed, and why:
Products used for throat/esophagus/oral care if needed, one per line Please also specify how well they work and specific dosage if different than prescribed, and why. Also, please specify, for oral care, what kind of toothbrush/toothpaste you use, and anything related to the care of the teeth, including surgeries or procedures.
What other medicines/vitamins are used? if needed, one per line Please also specify how well they work and specific dosage if different than prescribed, and why. Please include products for EYE care here.
Do you have any specific hints that worked and greatly enhanced the life of the patient? (If you need more room, use the 'comments' section below)
When the patient was a baby, what did you do for diapering? Please be specific, what brand did you use, was it a disposable, or cloth w/diaper covers or did you cut up a disposable... any details and tips you can share.
When the patient was a baby, what did you do for feeding? Please be specific, were you able to breastfeed or not, if it's a bottle, what brand did you use, did you alter the nipple, etc. Also, as they got older, any hints on products you added to the milk for calories, or baby foods etc.
Do you have anymore hints for parents of new babies? Please be specific, you can include products you used for bathing, additional measures and precutions you took so the baby would not get hurt, feeding items etc.
What does the patient eat? Please be specific, if patient can eat anything, do state that, if the patient can eat most but not certain things, state what, if the patient can only eat pureed foods, specify what a normal meal and what are the most popular things he likes, and, if the patient has a g-tube, do state what food you put in there (boost, pediasure) and anything else that you might add to the feedings and what the patient eats by mouth.
Products used for Wound Care one per line Please be as specific as possible! New parents need to know HOW products are used and WHERE. Use the Reorder # on package if possible! Here's an example: Vaseline Gauze: used on all wounds and healed wounds that are still 'red' Kendall Conform Stretch Bandage 2in (R#2231): used to wrap feet and hands because of softness over Vaseline gauze, and on some areas, over Webril. Kendall Webril Undercast Padding 4in (R#3175): used over Vaseline gauze in areas that need extra padding-such as feet, knees and elbows. 3M Coban 3in (R#1583):used over gauze on feet etc...
Additional Products used one per line Please be as specific as possible! THis space can be used for products not necessarily used for wound care, such as gloves, knee pads, special crams and ointments, special shoes, soft products, paddings, clothes etc...
Bandaging Instructions please start a new line per limb/area This area is to be filled in with specific instructions on how you wrap/bandage each body part. Start with the chest, arms/armpits, hands, then legs and finally feet. It might be a bit redundant because of the information you filled above, but it will be helpful in getting an overall view-at the end of each section, please explain why this way works best for the patient!: Ex. FEET: I start by putting either Aquafor, Zinc Oxide (on bad wounds that are not healing) or Protective Ointment, on all the red or raw areas. I follow by covering the entire foot with Vaseline gauze (Xeroform on areas that might be infected or smell bad) I then cover entire foot with one layer of Webril, except the ankle part, where I quadruple it. I then pad the bottom, toes and ankle with some 2.25in Kendall Kerlix (not a whole roll), wrap the entire foot with one roll of 2in Kandall, Conform 2in stretch bandage and cover the whole thing with Coban. It might seem like a lot, but with all this padding Nicky can run and even jump, and rarely has any new blisters! If you need more room, please feel free to write me an email at webmaster@ebinfoworld.com with the subject line: ADDITIONAL BANDAGING INSTRUCTIONS FOR PHP PAGE. Make sure to provide the name of the patient and form of EB so the comments can be put under the right patient. Thank you!
Does the Insurance Pays for the supplies/bandages?
Please give us the name of your Insurance company whether they pay or not...and state where you live. Please Note: If patient DOES NOT live in the United States, please specify what COUNTRY
If Insurance DOES NOT pays for supplies, who does? Please Note: If patient DOES NOT live in the United States, please specify how bandages are provided (through government or?)
Are there any Drs in your area that you could recommend that are knowledgeable about EB? These could be Pediatricians, Physical Therapists, Dentists, Dermatologists etc. If so, say YES, and then please provide the name of the city/state. Please note that if you say YES and you do enter the City and State your email address will be automatically linked for "more info please!" So another parent in your area can contact you. DO NOT state the name of the Drs here.	City/State or Province/Country
Comments and more info you would like to share. Information can be organizations that help you or have denied coverage and anything you can think of that can help another parent/patient. If you need more room, please feel free to write me an email at webmaster@ebinfoworld.com with the subject line: ADDITIONAL COMMENTS FOR PHP PAGE. Make sure to provide the name of the patient and form of EB so the comments can be put under the right patient Thank you!

Please Note: Submissions that do not include an email address (it is required) will not be posted. Because we are dealing with a serious issue on how to properly care for children with a serious disease, I will email you back to confirm your entry and perhaps ask additional questions before I post it on the website to make sure it is legit.

Please Allow the Webmaster a week to process the information and post it on the website.
Thank you!

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