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Debra of America
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12 recommendations and reviews from 6 people
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Referral from
August 6, 2019
Daisy L. asked:What’s the cheapest place to get mepilex foam 8 by 8?
Morgan R. replied:Contact debra.org
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Referral from
August 25, 2015
Carolyn G. asked:Vendors needed! Confirmed Vendors are Thirty-One, Paparazzi, OO, Perfectly Posh, Scentsy, Leggings & Tupperware. I am looking for Vendors or Crafters that have Childrens items. Please PM for App! https://www.facebook.com/events/432453726914702/Carolyn G. replied:I have seen so many photos of this disease and can not imagine the pain and suffering endured from this. Seeing and watching the video had me so upset that I felt that it would be good do raise monies for this disease in hopes it will help them find a cure or something that can help in some small way or another. Thanks for your comment as I appreciate it. I am working with Debra.org in this event.
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Referral from
December 10, 2014
Debra B. asked:My name is Debra Scales Babineau I have 2 adult children with RDEB, my son is 33 years of age and my daughter is 31 our biggest problem is coming up with doctors within the Ohio. We lived between Columbus and Cinn. and they have outgrown children's hospitals. My daughter needs a throat/dilalation specialist soon, and are not having any luck. Can anyone help????Leslie S. replied:Debra.org and here is her Email :) nursegeri@debra.org
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Referral from
May 12, 2013
Cody C. asked:Does anyone know where I might be able to get some supplies that I really need? I'm getting close to being out! And I just don't wanna run out of the important stuff that I have to have? so people let me know if you hear of anything? I would really really appreciate any help at all!!!Dawn L. replied:I emailed debra.org and requested supplies. They sent me a big box of the things i use...check it out!
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Referral from
August 20, 2012
Meghan S. asked:Hi All.... My son was just born on July 6, 2012 and on July 7 he was diagnosed with EB. We don't have his biopsy results back but his EB is mainly concentrated on his hands and feet. (for now) We recently got his hands and feet healed up from all the trauma fromt the hospital before his diagnoses and are now dealing with a weird skin rash from head to toe and the beginnings of webbing between his fingers. We are in the Lancaster, PA area and I have been trying to find support in our local area but have not had any luck. I'm also trying to find a local doctor for Primary care and for dermatology that are more specialized with EB. Does anybody know where I may be able to find resources to find local doctors? Any help, advice, etc is appreciated. Thanks!Angel M. replied:WELCOME!!! Congrats on the birth of your little one. This lounge is a wonderful place to be a part of. Geri is the nurse educator with Debra.org, and is a great place to start! Has anyone seen him for the rash yet?
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Referral from
January 29, 2015
Noana R. asked:I was wondering if anyone can give me some fund raising suggestions. I so badly want to try and get teeth. I had all mine taken out about 15 yrs ago. I wasn't in a hurry to do anything about it because I was busy raising my son's along with dealing with other health issues. Well I am fed up with having to smash down everything that I eat. I can't keep any weight on and my healing process is slow. As with any one who has EB, my mouth is small and fragile. I want a dentist who knows what he/she is doing. Help?Jennifer B. replied:Do you live in the states? if so, may I ask where...Geraldine Geraldine Kelly-Mancuso can try and help find a dentist near you or offer the closest EB center to where u live...as for fundraising it's something you have to search out...I am dealing with the same issue myself atm...go to debra.org...feel free to pm me if u have any questions...u can always start your own fundraiser woth one of the online fundraising sites and post that on YOUR PERSONAL FB page ;)
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Referral from
September 9, 2014
Leanne N. asked:Can anyone advise me on what info would be good to provide to perspective nursery/ pre school settings to outline what EB is and roughly what additional needs she may have etc ? We are in the UK if that helps. I think some people have printed leaflets off or something!? Thanks :)Jennifer B. replied:Check our file section...SooAnn Roberts Pisano did some school info sheets...also try debra.org they have a classroom dvd that has a section for students and one for teachers that show and explain about eb xx
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Referral from
May 24, 2013
Kyra K. asked:Hello! i just wanted to introduce myself. I was recently added to the group. My 10 month old daughter Belle was diagnosed with EB when she was about 5 months old. It's definitely milder, but we're not sure exactly what type. Her doctor wanted to hold off on doing a biopsy until she was a little older. It's definitely gotten much worse since she's been moving around and doing more. She's now crawling and getting into everything and mainly her hands and feet are affected by it. I just had a quick question...over the winter we used thick, cushy cotton socks with aquaphor and it worked great to prevent blistering on her feet. Now with the heat it's just gotten horrible and we're not sure what the best thing to do is. Also, socks alone haven't been cutting it so we've been putting crocs on too (the only shoes that stay on and also haven't caused blisters). It's just the moisture that's causing her skin to just blister and peel almost completely off. Is there anything else that could be used? I feel like she needs the padding of the socks but they seem to be doing equal harm. Is there something I don't know about? Thanks in advance! We don't have EB anywhere in either of our families so we're at a total loss with how to get a handle on this.Jennifer B. replied:http://debra.org/
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Referral from
October 19, 2012
Patricia C. asked:I need information please. Antonio needs dental work. His local dentist does not feel comfortable doing the work. I live in NJ will travel to Cinncinati.suggestJennifer B. replied:there are excellent dentists in nyc that can do the work...call the eb center there or call geri for help in locating one...212 868 1573 also Dr. Levine in nyc is excellant!! he was my dentist until i trnd 18 an he was wonderful....lots of exp with eb...212 877 5577
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Referral from
June 9, 2012
Gemma W. asked:Looking for suggestions - I am getting married in november and would like for my bridesmaids gifts (possibly jewellery) to be EB related. We are also thinking of making a donation to Debra in lieu of favours x Does anyone know any websites?Jennifer B. replied:just go to debra.org or call 212 868 1573...someone recently did that for their wedding : )
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Referral from
February 22, 2012
Trisha K. asked:in the Hospital with Seth and I need a printout with basic dos and donts for nurses. Anyone know where I can find one?Jennifer B. replied:If u don't have access to a printer u can go to patient advocate office an they should help u get it printed...Debra.org should have basic info an dos an donts for hospital care if need I ASAP
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Referral from
October 24, 2011
Andrea N. asked:What's the best hospital near Albany or NYC for EB babies?Jennifer B. replied:columbia presby in NYC...I would get the dr's number that Melissa suggested or contact debra.org for a dr referral for NYC...
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