Epidermolysis Bullosa Info & Awareness
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…
I promised a few friends who could not make the conference, that I would take ‘good notes’ about products, talks and progress in the treatments for EBers from this event, so I will try to be as descriptive as I can, noting that a lot of the lingo is way beyond my level of comprehension,…
By Emily Spurrier From her Blog: Dys-Located This is the fifth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** Following the demise of my first serious relationship, I figured honesty was still the best policy with those I had dated. With the first potentiality, however, intimacy was not an…
This is part 2 of a series of posts I will make with wound photos that Facebook does not allow me to post. Post #1 is here. I took some photos of Nicky’s wounds to be shared at the Hydrotherapy yesterday, June 18, 2012. I just updated Nicky’s journal about how he is currently doing,…
By Emily Spurrier From her Blog: Dys-Located This is the fourth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** By the time I was fourteen, I was able to walk long distances, but could not do so in shoes. I was in an adapted physical education…
