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May 9, 2008, 9:15pm





Welcome to the new and improved EB Community Message Forum. This forum is open to anyone in the EB Community, patients, family, friends, health professionals and anyone who wants to learn about Epidermolysis Bullosa. No matter your age, where you live in the world or what form of EB you may have please pull up and chair and make yourself at home. Please note - you must first register in order to post to this forum, registration is easy and free.

You are encouraged to voice your opinions, questions, concerns, suggestions, ideas and hopes. However, disrespectfulness will not be tolerated, we are here to support each other and work together. If you would like to report a post that is offensive please let the administrator (who's name is in red) or a forum moderator (who's names are in blue) so that we may remove the offensive post from the forum. Please read the Forum Rules before posting to this forum.

If you have ANY suggestions to make this forum better or if you would like to suggest a new board topic or would like a private or password protected board created for a specific group or purpose please contact me, the forum administrator. Also if you would like to be a forum moderator please contact me. Enjoy your stay and don't forget to check out the Calendar and Chat Room! Chat events will be scheduled soon!

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EB Community Message Forum :: Home
News
Forum NameTopicsPostsLast Post
Announcements
[ ]Forum News
Forum updates, news and polls.
25on Mar 21, 2007, 12:33pm
by pezmanchris
in Forum Rules
[ ]EB Patient Site News
EB Through the Eyes of a Patient site news and updates.
00
[ ]EB Health and Home News
New products, sales and updates to the EB Health and Home store.
22on Mar 20, 2007, 5:20pm
by Cristina
in Shea Butter now availa...
[ ]Upcoming Events
Upcoming EB events such as fundraisers, support group meetings, conferences etc. post them here and don't forget to also POST THEM TO THE CALENDAR! The calendar link is at the top of this page.
23on Mar 16, 2007, 6:39pm
by pezmanchris
in Noelle Hermes Foundati...
[ ]EB in the Media
News articles, tv shows, radio shows, books or websites featuring EB. Post them here and don't forget to also POST THEM TO THE CALENDAR! The calendar link is at the top of this page.
33on Jun 14, 2005, 2:29am
by Cristina
in The Boy Whose Skin Fel...
Newbies
[ ]Introductions
You can post a message here to introduce yourself and get to know everyone else.
417on Mar 17, 2008, 12:21pm
by connie
in looking for an adoptiv...
[ ]Guests and Visitors
Guests and Visitors can post comments or questions here without becoming a member.
22on Apr 28, 2008, 11:36pm
by Gabriel J
in You are an incredible ...
EB Health and Care
[ ]General EB Q&A
Post your general comments and questions concerning EB here if you find it doesn't fit into any of the below categories.
24on Mar 21, 2007, 9:44am
by Cristina
in How to Deal with the S...
[ ]Skin and Wound Care Issues (8 sub-boards)
Subcategories include Bandaging and Wound Care, Infection/MRSA, Dry Skin and Scalp Issues, Itching, Milia, Skin Cancer, Scarring and Contractures and Miscellaneous
312on Apr 20, 2007, 10:59am
by Cristina
in MRSA
[ ]Digestion and Nutrition Issues (6 sub-boards)
Subcategories include Nutrition and Weight Gain, Soft and Pureed Recipes and Ideas, Constipation and Diarrhea, G-tubes, Acid Reflux and Miscellaneous.
00
[ ]Miscellaneous EB Health Issues (9 sub-boards)
Subcategories include Anemia, Corneal Abrasions and other Eye Issues, Ears and Earwax, Nail Issues, Nose Bleeds Sores and Dryness, Temperature Regulation (overheating/chills), For Adults Age 18+ (to discuss personal issues relating to EB, a password is needed to view this board), Piercings and Tattoos and Miscellaneous.
00
[ ]Pain Management
Questions, suggestions and treatment options concerning pain management.
00
[ ]Medical and Surgical Procedures (12 sub-boards)
Subcategories include Anesthesia Issues, Blood Draw, Blood Transfusion, Iron Infusion, Esophageal Dilitation, Dental Surgery and Procedures, Hand Surgery, G-tube Placement/Removal, Skin Biopsy and Cancer Removal, Skin Grafts, Amputation and Prosthesis, and Miscellaneous Surgeries and Procedures.
37on Apr 20, 2007, 11:34am
by Cristina
in IV Placement
[ ]Exercise and Physical Therapy (4 sub-boards)
Subcategories include Stretching and Yoga, Hand Exercises, Strength Building, and Miscellaneous Physical Therapy.
12on Mar 20, 2007, 1:37am
by pezmanchris
in A Guideline To Physiot...
[ ]Alternative Medicine
Questions, suggestions and experiences using all natural products to treat EB such as herbs, supplements, emu oil, shea butter, active manuka honey etc.
00
[ ]Mental Health
Questions, suggestions and treatment options concerning mental health issues such as depression and anxiety.
00
Products, Supplies and Services - Ratings, Reviews, Questions and Suggestions
[ ]Doctors and Hospitals
Recommendations for doctors and hospitals that are especially able to handle EB patients.
00
[ ]Bandages, Ointments/Creams and Other Supplies (2 sub-boards)
Ratings, reviews, questions and suggestions for bandages, ointments/creams and other supplies.
715on Mar 12, 2007, 9:47pm
by chastity
in Elastomul
[ ]Medications, Supplements and Natural Remedies (3 sub-boards)
Ratings, reviews, questions and suggestions for medications, supplements and natural remedies.
00
[ ]Clothing and Shoes
Ratings, reviews, questions and suggestions for clothing and shoes.
00
[ ]For Babies and Young Children
Ratings, reviews, questions and suggestions for products specifically for newborns/babies, toddlers and young children.
00
[ ]Medical Equipment
Ratings, reviews, questions and suggestions for medical equipment such as wheelchairs, lifts, special beds, bandage tables etc.
00
[ ]Independent Living Aids
Ratings, reviews, questions and suggestions for independent living aids.
00
[ ]Misc. Services and Resources
Ratings, reviews, questions and suggestions for misc. services and resources.
00
EB Parents and Caregivers
[ ]New Parents/Caregivers
For new parents/caregivers of EB children
00
[ ]Genetic Testing & Counseling
Genetic testing, counseling and other genetic related issues.
00
[ ]Behavioral Issues
Questions and suggestions concerning behavioral issues.
00
[ ]Developmental Issues
Questions and suggestions concerning developmental issues.
00
[ ]Potty Training
Questions and suggestions concerning potty training.
00
[ ]School Issues (1 sub-board)
Questions and suggestions concerning school issues.
00
[ ]Sibling Issues
Questions and suggestions concerning sibling issues.
00
Insurance, MediCaid, SSI and more
[ ]SSI
Questions and suggestions concerning SSI issues.
00
[ ]Insurance and Medicaid Issues
Questions and suggestions concerning insurance and Medicaid issues.
00
EBers
[ ]Dystrophic
For those with the Dystrophic forms of EB.
00
[ ]Junctional
For those with the Junctional forms of EB.
00
[ ]Simplex
For those with the Simplex forms of EB
00
[ ]Acquisita
For those with the Acquisita form of EB.
00
[ ]EB Angels
Memorials and messages for those beloved butterflies who have passed away from EB.
00
Young Adults
[ ]EB Teens
Ages 13-19
00
[ ]EB Kids
Ages 13 and under
00
Skin Disorder Camps
[ ]Camp Wonder
For anyone who has or plans to attend Camp Wonder in Northern California or North Carolina
00
[ ]Camp Discovery
For anyone who has or plans to attend Camp Discovery in Minnesota
00
[ ]Camp Horizon
For anyone who has or plans to attend Camp Horizon in Pennsylvania.
00
[ ]Camp Dermadillo
For those who has or plans to attend Camp Dermadillo in Texas.
00
EB Awareness and Fundraiser Ideas
[ ]Awareness Ideas and Products
Ideas, thoughts and suggestions to spread EB awareness and links to EB awareness products.
44on Sept 8, 2007, 9:42pm
by pascale
in eb project !
[ ]Fundraising Ideas
Ideas, questions and suggestions to raise money for EB.
00
Research and Studies
[ ]Current Research
Questions and updates concerning EB research updates, gene therapy, stem cell research, and current studies in progress.
00
Inspiration
[ ]Inspirational Help
If you have a particular book, movie, tv show, thought, or idea that is inspirational to you post it here
00
[ ]Inspirational Quotes and Poems
Post your favorite inspirational quotes and poems, whether they be famous, ones you've made up or an EB child has said or written.
48on May 1, 2007, 7:52pm
by Cristina
in Eulogy
Fun Stuff
[ ]Talent
If you have a talent such as writing, drawing, singing, web design, fashion or even unusual talents, show them off here!
00
[ ]Chit Chat
Talk about anything you want here... well almost anything ;)
00on Jul 22, 2005, 6:26pm
by ebmom
in Moved: EB Awareness Be...
More
[ ]Questions for the Administrator
If you have any questions for me specifically, post them here.
00
[ ]Suggest a Board Topic
If you would like to suggest a board topic relating to EB that is not already in the forum, please post your suggestions here and I will be happy to accommodate your request!
00


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Total Topics: 39   -   Total Posts: 84
Last Updated Topic: You are an incredible woman!! by Gabriel J (Apr 28, 2008, 11:36pm)
View the 15 most recent posts of this forum.
Total Members: 39
Newest Member: tmg1125
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