Epidermolysis Bullosa Friends

 

EB Friends was created under the close guidance of Cristina Perez. We shared the hope of filling a void in the EB Community. We were seeking a place where EVERYONE involved with EB, whether directly affected, a caretaker, family member, or friend could gather to share information and stories. A place where each one of these individuals could express themselves OUTSIDE the world of EB too.

This is your network as much as it is ours. You have input into how it grows and evolves. All suggestions will be considered. The only things we ask of you is to be cordial with one another publicly no matter how you are feeling. Report any alleged misinformation to us. Keep EVERYTHING on EB Friends kid safe.

The EB Friends Team are members first and are only moderating to assist you and keep the place pleasant. They do not want to be censors so, PLEASE use common sense when posting photos, videos and the written word. Thank you and have fun here!


July, 4 1983 - October 7, 2007

EB Friends is dedicated to the memory of Cristina Perez. Cristina offered the EB Community countless gifts through her wisdom, support and encouragement. Cristina was EB Friends' co-creator and mentor. This social network was her last gift to all of us.


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Photos

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Members

  • Chris (Pez)
  • Shannon Luchsinger
  • Melissa Jones
  • WEB MASTER
  • Stevie Hislop εϊз
  • Jane nicolle
  • Meghann Turnquist
  • Kaye Davis
  • Connie Holland
  • Pam Wooten
  • Janine
  • carla jacobs
  • jamie hartley
  • Carmen Figaroa
  • Roger
  • Kevin Graham
  • Martin
  • sharon
  • Gillian Jenkins
  • Laura
  • lorraine spaulding
  • bethann
  • Sara Denslaw
  • Michelle Turner
  • laurie
  • Logan
  • Tracey Broadfoot

Keep up on all the news about EB... Sign up for Google News Alerts... Currently the best service of this type... Receive an email every time EB is mentioned by the leading news agencies and magazines around the world... CLICK HERE to sign up... Check out more News Alert services HERE...


Do you need advice on a personal issue but don't want everyone knowing it's you? Do you have advice for someone but don't want people to know you have experienced the same issue? We offer a service for you to post anonymously. For more information please CLICK HERE.

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SCROLL THROUGH THE BOXES BELOW TO SEE THE LATEST ACTIVITY,
LATEST FORUM POSTS & LATEST BLOGS

MAIN EB FORUM

Janine

Find me a Business Name and win $100 Gift Voucher 21 Replies

Started by Janine in ANNOUNCEMENTS. Last reply by jamie hartley 9 hours ago.

Kasia

diaper rash - help! 5 Replies

Started by Kasia in UNCATEGORIZED POSTS. Last reply by Carmen Figaroa 19 hours ago.

Logan

Constipation: What helps besides Miralax? 7 Replies

Started by Logan in DIGESTION AND NUTRITION. Last reply by jamie hartley 19 hours ago.

Tracey Broadfoot

hello from Scotland!!! 6 Replies

Started by Tracey Broadfoot in NEW MEMBERS/NEW EB PARENTS AND CAREGIVERS. Last reply by Janine 1 day ago.

Katie Murray

URGENT: Need help from any families in Dallas/Ft. Worth 1 Reply

Started by Katie Murray in TRADING/SHARING/REQUESTING SUPPLIES. Last reply by Sara Denslaw 1 day ago.

robert collins

dentuers 3 Replies

Started by robert collins in TEETH. Last reply by robert collins Feb 7.

Karrie

Hair 4 Replies

Started by Karrie in BEAUTY TIPS, HYGIENE & GROOMING. Last reply by Lori Feb 6.

Jan Chadwick

PCC - Cincinnati Ohio 6 Replies

Started by Jan Chadwick in PATIENT CARE CONFERENCE. Last reply by Barbara Fischer Feb 6.

Michelle Turner

Pain level 4 Replies

Started by Michelle Turner in PAIN MANAGEMENT. Last reply by Michelle Turner Feb 5.

Sara Denslaw

New yogurt high in protein 1 Reply

Started by Sara Denslaw in DIGESTION AND NUTRITION. Last reply by Michelle Turner Feb 5.

Katie Murray

stickers 2 Replies

Started by Katie Murray in UNCATEGORIZED POSTS. Last reply by bethann Feb 5.

connie peters

Would like a 6 yr old 'friend' for my daughter 3 Replies

Started by connie peters in CONNECTING WITH OTHERS. Last reply by Trisha Knuth Feb 5.

Barbara Fischer

How is Jamie 6 Replies

Started by Barbara Fischer in ANNOUNCEMENTS. Last reply by Lori Feb 4.

Jo

Help for Palestinian Member 13 Replies

Started by Jo in ANNOUNCEMENTS. Last reply by Chris (Pez) Feb 4.

Chris (Pez)

For The Ostrander Family 7 Replies

Started by Chris (Pez) in EB ANGELS. Last reply by Sue Ostrander Feb 3.

Stevie Hislop εϊз

My new Youtube videos!! 6 Replies

Started by Stevie Hislop εϊз in BEAUTY TIPS, HYGIENE & GROOMING. Last reply by Ronna Lee Hoffman Feb 2.

Shannon Evans

Mystery Pains Help Please 27 Replies

Started by Shannon Evans in PAIN MANAGEMENT. Last reply by Shannon Evans Feb 1.

BLOG POSTS

Sharon Gould

Andre passed away this morning 7th feb 2010

Posted by Sharon Gould on February 7, 2010 at 11:21am — 7 Comments

Eric Duffield

Daisydolls new baby brother

Posted by Eric Duffield on February 2, 2010 at 4:28pm — 6 Comments

Janine

Something Good From EB

Posted by Janine on January 23, 2010 at 2:38am — 12 Comments

derek/ mom

happy b, day my angel

Posted by derek/ mom on January 16, 2010 at 11:47pm — 5 Comments

Sara Denslaw

New Bows

Posted by Sara Denslaw on January 15, 2010 at 2:09pm

Eric Duffield

Re Facebook

Posted by Eric Duffield on January 12, 2010 at 2:50am — 1 Comment

alma monroe

new baby!

Posted by alma monroe on January 10, 2010 at 12:39am — 7 Comments

Eric Duffield

Hi I am back

Posted by Eric Duffield on January 9, 2010 at 2:42am — 5 Comments

robert collins

Life

Posted by robert collins on January 4, 2010 at 8:23pm — 2 Comments

CREATIVE WRITERS

connie yates

jumble of thoughts 4 Replies

Started by connie yates in MEMBERS' RAMBLINGS. Last reply by Lisa Paredes Feb 2.

jamie hartley

My Life History 17 Replies

Started by jamie hartley in EB STORIES. Last reply by Lisa Paredes Feb 2.

Edward

The story I wrote all by myself (The Hot Summer) 2 Replies

Started by Edward in MEMBERS' RAMBLINGS. Last reply by Chris (Pez) Jan 24.

Elizabeth Chabot

Butterfly Child 4 Replies

Started by Elizabeth Chabot in POETRY CORNER. Last reply by Connie Holland Jan 6.

Chris (Pez)

WELCOME TO THE DO DROP INN! 354 Replies

Started by Chris (Pez) in The Do Drop Inn. Last reply by Shannon Evans Aug. 24, 2009.

Martina D. Robinson

My Story 2 Replies

Started by Martina D. Robinson in EB STORIES. Last reply by Martina D. Robinson Aug. 20, 2009.

Kara Blust

A Girl 5 Replies

Started by Kara Blust in POETRY CORNER. Last reply by Chris (Pez) Jul. 6, 2009.

Cristina

This Journey 7 Replies

Started by Cristina in POETRY CORNER. Last reply by Chris (Pez) Jul. 5, 2009.

Gabbie's Mom

BUTTERFLIES TO EAGLES 1 Reply

Started by Gabbie's Mom in POETRY CORNER. Last reply by Chris (Pez) Jun. 11, 2009.

Mel Marshall

Butterfly Angel 7 Replies

Started by Mel Marshall in EB STORIES. Last reply by Sue Ostrander Dec. 1, 2008.

Chris (Pez)

EB, DNA & SALVADOR DALI 4 Replies

Started by Chris (Pez) in MEMBERS' RAMBLINGS. Last reply by Connie Holland Aug. 4, 2008.

Todd Stalinski

To The Stars 3 Replies

Started by Todd Stalinski in POETRY CORNER. Last reply by Toshacat Jun. 9, 2008.

Diasuke

How I Met Kyo-chan 2 Replies

Started by Diasuke in MEMBERS' RAMBLINGS. Last reply by Diasuke May. 1, 2008.

jamie hartley

EB Moments 17 Replies

Started by jamie hartley in MEMBERS' RAMBLINGS. Last reply by Sandy MacDonald Apr. 7, 2008.

liziefer

Running In The Rain (chapter 2) 5 Replies

Started by liziefer in MEMBERS' RAMBLINGS. Last reply by Mel Marshall Mar. 13, 2008.

Novelette

Friend 3 Replies

Started by Novelette in POETRY CORNER. Last reply by jamie hartley Jan. 14, 2008.

Novelette

Debating the existence of Safety 3 Replies

Started by Novelette in POETRY CORNER. Last reply by Novelette Jan. 12, 2008.

Novelette

The Body's damage to the soul

Started by Novelette in POETRY CORNER Jan. 12, 2008.

Novelette

Grieving

Started by Novelette in POETRY CORNER Jan. 12, 2008.

liziefer

Journey Of Worlds 2 Replies

Started by liziefer in MEMBERS' RAMBLINGS. Last reply by Connie Holland Jan. 11, 2008.

LATEST ACTIVITY

WEB MASTER updated their profile
55 minutes ago
A photo by Stevie Hislop εϊз was featured
1 hour ago
jamie hartley added 2 videos
2 hours ago
Shannon Luchsinger and Melissa Jones joined Epidermolysis Bullosa Friends
4 hours ago
9 hours ago
Gillian Jenkins updated their profile
22 hours ago
Janine updated their profile
yesterday
Joy Thornton added 3 photos
yesterday
Kasia added a discussion
Maya has bad diaper rash (first time in her life, she is 19 months old) that I have no clue how to cure. We tried warm baking soda baths, diaper rash creams (triple paste, desitin) nothing seems to help. It has been day 6 and she is extremely misera…
yesterday
Eric Duffield added 2 photos
on Sunday

Encouraging getting to know each other beyond our connection to EB
and becoming true friends in a supportive community since March 4, 2007

EB Friends does not endorse any drugs, tests or treatments that may be reported here.
The treatment information on this network should be considered as only suggestions.
Please always consult with your physician before adopting any medical treatment.
 
 

THE EB FRIENDS TEAM

The EB Friends Team

CHRIS__}i{__CONNIE__}i{__ JO__}i{__SARA__}i{__STEVIE__}i{__

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KEEP UP WITH ALL THE LATEST ACTIVITY
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last update - February 5, 2010

last update - December 29, 2009

last update - February 6, 2010

Groups


Let's celebrate the special days of our EB Friends! Just click on their name to leave a greeting on their page.


SATURDAY February 6th

Abby- Valerie Jones’ daughter turns 3 today!

Beth Holland- Mia’s Aunt celebrates today!

SUNDAY February 7th

Anthony- Dawn Hirt’s son celebrates today!

Barry- Sharon’s husband celebrates today!

Reid -Quinn Foreman’s brother celebrates today!

MONDAY February 8th

Malachi- Carla Jacobs’ grandson celebrates today!

TUESDAY February 9th

Janine- Our friend Janine celebrates today!

Cole -Pam Wooten’s son turns 11 today!

Ralph- Connie Holland’s husband celebrates today!

WEDNESDAY February 10th

Kaye Davis- Our friend Kaye celebrates today!

Leah -Meghann Turnquist’s daughter turns 1 in Heaven today!

Jane Nicolle- Our friend Jane celebrates today!

Music

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