Epidermolysis Bullosa Info & Awareness
These programs help low-income families (usually) or/and children with special needs. When you click on the link for YOUR State’s Department of Public Health, search for (if it’s not immediately evident) ‘Children Health’ or ‘Children Medical’ services. If the NAME of the State Program and information it is known, that information will be below the…
This speech was written by Jonathon Connolly and he read it at the State House for “Rare Disease day”. ****************************** Good Afternoon everyone: On August 7th 1999 I was born a healthy baby boy. 5 days later began the challenge of a lifetime. I was not officially diagnosed with EB until I was 3 months…
By Christie Zink From her Blog: I Refuse EB *************************** Epidermolysis Bullosa…I remember the first time I ever came across those words. I did not realize at the time that those words would impact me so profoundly. It was late at night and I happened to see the link to a blog on a Facebook page that I had started…
Being born and living with E.B. is one heck of ride, never a dull moment. My inspiration for this book was my family, no matter what I’ve been through or what I’ve wanted to do in life, they have always been there for me. I am a young independent woman because my parents allowed me to…
Kidowed is an e-book available on Amazon.com about a mother who had two children afflicted with the fatal Junctional-Herlitz subtype of Epidermolysis Bullosa. Her story is one of tragedy and loss, but also hope, victories, and humor. The book was originally written as a journal, and has remained in that format. The author, Jessica Kenley,…
By Christie Zink From her Blog: This Little Light *************************** It has taken me some time for me to write this post. I have sat down to write it multiple times, only to get back up because I found myself so full of emotion that I could not even find it within me to type. There…
By Silvia Corradin From: Special Mommy Chronicles (Unpublished Column from September 7, 2006) Living day by day with a child that needs so much attention and care, can leave us feeling drained and depressed.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…
