Comments for Support Epidermolysis Bullosa (EB)

Comment on Remembering Alice Ervin by Flip

Flip — Mon, 31 Oct 2011 22:31:31 +0000

We were going to see Star Wars when it came out in 3D, and then stay up late talking about it.

I’ll be donating the cost of her tickets, my tickets (and my popcorn) as it comes out. And possibly more, if I can manage it.

Comment on About EB (FAQ) by The Butterfly Disease. « Blue Petal Blog

The Butterfly Disease. « Blue Petal Blog — Fri, 28 Oct 2011 06:52:25 +0000

[...] little girl was diagnosed not long after birth with a disease called Epidermolysis Bullosa. What is Epidermolysis Bullosa ? Please read the link. It seems simple in my head to explain and the reasoning of why it happens [...]

Comment on Research by barry

barry — Wed, 22 Jun 2011 05:57:30 +0000

it is online at: newcoteatree@telus.net

Comment on Research by Irena

Irena — Wed, 18 May 2011 18:57:56 +0000

Dear Berry,

What is the website that we can by this ointment?

Thank you,
awish you all the best

Comment on Research by Irena

Irena — Tue, 17 May 2011 19:52:08 +0000

Hello Barry,

My son is almost 24 months old, and he has an EBS, what is this ointment do?
What is the name of the ointment?

Thank you,
Irena (Israel)

Comment on Remembering Alice Ervin by Charlene Ford

Charlene Ford — Tue, 29 Mar 2011 15:04:17 +0000

I had the honor to meet Alice & her Mom at an EB Confrence held at Sick Kids Hostipal in Toronto several years ago. She was definatley an inspriation to my family and I am sure to many many more within the EB Community. I know her Mom was so proud or her courage and she will forever be remember by my family for this same courage!
Please know that out thought s& prayers are with her family at this difficult time.

Take care
The Ford Family from Mount Pearl , NL

Comment on Remembering Alice Ervin by Judy Wilson

Judy Wilson — Wed, 23 Mar 2011 05:02:01 +0000

This young woman must have been an incredibly brave person. In addition to dealing with treatments, dressings, and the pain in general, she was, I notice, a member of the Board of debra, and had dreams of becoming a sports writer.

I have a son who suffers from EB, so I know how painful and time-consuming the treatments for this disease can be. The passing of Alice Ervin leaves a very large gap in this world.

My sincere condolences to her family and friends.

Comment on Research by barry wilson

barry wilson — Thu, 20 Jan 2011 15:11:51 +0000

try SULFORATHANE OINTMENT AND CAPSULES!! it works for me…….good luck….barry

Comment on Research by barry wilson

barry wilson — Thu, 20 Jan 2011 15:09:34 +0000

i have eb since birth,with the usual blisters etc. my case is mild compared to most i am sure,however,i have been doing a little online research. You probably know already about the research at the univercity of minnesota into eb.In case you don’t, i have been trying SULFORATHANE ointment and capsules.I cannot believe the results,i urge you to try it. sincerely, barry wilson…………barrywilson@shaw.ca

Comment on Research by Cat McFadden

Cat McFadden — Sat, 13 Nov 2010 15:26:11 +0000

You have created a wonderful support system for EB and I greatly appreciate this as I suffer from this disease as well. I am hoping to transfer my research career into studying this disease but am actually not well enough informed as to who is doing the research in Ontario. Could you give me a potential list of research facilities studying this for me? I did hear of some work being done at Sick Kids in Toronto but haven’t heard much about them lately.
Thank you very much for your time and the time you take to make people aware of our discomfort.
Have a wonderful weekend,
Cat McFadden