Epidermolysis Bullosa Info & Awareness
By Silvia Corradin From: Special Mommy Chronicles (Unpublished Column from September 7, 2006) Living day by day with a child that needs so much attention and care, can leave us feeling drained and depressed. I’ve always heard from everyone that moms should take time out for themselves, but sometimes that is too daunting of a task to…
It seems as if all people see, when they come in contact with a child with EB, is gauze. Some wonder if the patient has been into an accident or a fire, others fear it’s contagious: “what happened?” is a common question tossed around, but most just look dumbfounded, not being able to formulate a thought…
By Emily Spurrier From her Blog: Dys-Located This is the sixth and final entry in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** Earlier in life, I had envisioned myself having three children. I always said that the first would be a boy, the second, a girl… and the third…
A consensus Approach to Wound Care This talk was given by Dr. Elena Pope and it was very interesting. I think what would have helped more-and perhaps this is something I will suggest for future conferences-if it came with a full blown Wound Care 101 with explanation and showing of the different products available. I…
I want to thank everyone for their patience… tomorrow I will post my final blog about the conference! This post is probably the most important and favorite post of mine as well, since it includes the information from the speakers that I was looking forward to hear the most to give Nicky HOPE. So… here…
Here is more information about several talks from the conference from July 31, 2012: Common Gastrointestinal Problems in Patients with EB & Nutritional Challenges in EB People with EB and Clinicians Working Together. These two talks were done by Dr. Michael Farrell & Dr. Lynne Hubbard respectively. I have to be honest-both presentations were old…
Here is more information about several talks from the conference from July 31, 2012: Anesthesia for your child with Epidermolysis Bullosa & Interdisciplinary EB care These two talks, which I will bunch up together simply because I don’t remember a whole lot from them separately, were done by Dr. Eric Wittkugel & Dr. Anne Lucky, both…
Good Morning everyone! Today I will continue with the talks from Dr. Jakub Tolar about PIP Stem Cells to optimize EB treatment and Dr. Anna Bruckner with Anemia. To see the slides in an enlarged version, simply click on the photo. Personalized Induced Pluripotent Stem Cells for Optimizing EB Treatment This talk was presented by…
Before continuing with the blogs about the PCC I wanted to address a question that was presented to me: since Debra has stated that they would post the videos of the conference on their website, why bother doing the blog? Aside the fact that I would have rather been ‘thanked’ than made me wonder if…
Day 2 at the PCC was the most intense one, 15 speakers in all! Here’s what the first 2 speakers of the day had to say: What are the odds? Dr Amy Paller conducted this talk about genetics and EB. This talk to me was old news, blah blah, ha ha. I am certain that…
