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EB Treatments « Result #1 on Nov 30, 2009, 12:26am »
I have a friend that was of course born with EB. He is now 46 and doing fine. He has the worst case. Over the years and all the treatments and seeing doctors all over the world.....he has found the best ways to treat it.
You have to look at like regular skin...not a burn. It is weaker skin, only. It needs to be dried out and toughened up. The ocean water and sun are miracle healers for his wounds when they appear. You never cover up the skin to retain moisture. It must have air. For wounds that blister, they need to be drained with the skin film left on for protection. Hydrogen Peroxide is the best for treatment. Band-aid only for blisters that lose the film.
There are no other treatments that work.
I hope this helps...you can contact me at paperrozes@gmail.com if you would like more info....Thank you!
Re: Forum Rules « Result #2 on May 21, 2009, 8:04am »
Hi Folks,
I'm a nutritionist in Toronto and this is my first time on this site. I just became aware of this condition through an article in the Toronto Star. I have a question that has probably been asked a hundred times but I'll ask anyway. Has anyone looked into the possibility that allergic reactions may be one of the causes of EB. For example, we know that foods like wheat, dairy products, soy, corn, nuts and eggs can often be major causes of various conditions like Eczema , Crohn's and Colitis. I would appreciate it if someone could send me any comments on this.
The EB Community Message Forum was created for all patients, family members, friends, health professionals and anyone else affected by the skin disorder Epidermolysis Bullosa.
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You are amazing! « Result #5 on Dec 3, 2008, 4:56pm »
I saw your story on Medical Incredible last night. I'm a parent with EB Simplex and two children who also have it and I think you're an inspiration to all. God bless you from Chicago IL.
I am looking for some help on some shoes that I found on the web that are supposed to be developed for people with EB. They are called weebors, (you can search for them on Google). I am wondering if anyone has ever tired them, knows anything about them etc. My daughter and I suffer from EB Simples (webber-thingyayne) and I was wondering if they might work for our condition. Any information would be great since I cannot find anything but info from the manufactures. Thanks for the help
Hello everyone!! I am so glad I finally found a site that has a discussion forum about the disease we all suffer from. I used to use the one on the Debra site but I can no longer find it. Does anyone know where it went?
I am a EB simplex suffer (weber-thingyayne) and I hope to use this site to help my daughter who also has the disease. I am looking for treatments etc. for the condition. I am also going to post about my accomplishments and how I have overcome the disease. I am looking forward to hearing for everyone.
looking for an adoptive family « Result #9 on Mar 17, 2008, 12:21pm »
I am an adoption social worker with a foster care agency in Florida.I currently have a child with EB who is in need of a forever family. I can be emailed at cgoing@sarasota-ymca.org, for more specific details. Because of confidentiality I will answer specific questions via email. I will be glad to answer general questions here however, and also if anyone has any resourses please feel free to forward my information. I am grateful for your site and this forum.
eb project ! « Result #10 on Sept 8, 2007, 9:42pm »
Hello, My name is Pascale and I am currently starting a project with my fiancé, Dan, to spread EB awareness. Dan has EB, most likely Junctional, although doctors still can't say for sure. He's 21 and has taken up photography about 2 years ago. We recently had an idea to make an EB photo book, to show what EB is, spread awareness in an artistic way and of course send the proceeds to EB organisations such as DebRA. I am writing this message, hoping to find contacts in our area, Montreal, QC, Canada. If you are or know someone with EB in our city who would agree (or whose parents would agree) to let us take pictures for this cause, we would really appreciate. My email is pascale.poirier@gmail.com or you can answer this message directly on the thread. Thanks a lot.
Cristina Administrator Head Butterfly member is offline
Joined: Mar 2005 Gender: Female Posts: 46 Location: California
Re: Eulogy « Result #11 on May 1, 2007, 7:52pm »
That was a beautiful poem thank you so much for sharing it! I also answered yes to the poll, a great man named Kermitt lived to be 60 I believe. He just recently passed away. He survived skin cancer and a leg amputation for many years afterwards. There are so many inspirational EB adults, it really gives me hope that I could survive that long.
Jackie Lynn 1954-1996 Jackie Lynn took my heart, Gently changed it's form, And handed back a gift from God That could weather any storm. Often late at night She would tell me stories of her life, Pouring out 42 years, Until the morning light. I listened in amazement As she never said "Why Me?" She felt that those who loved her, Were the real victims of EB. Jackie didn't just overcome EB, She made it disappear, Overshadowing it with a love of life, While death was always near. In her eyes I saw eternity, And it took away my breath, Surely just such eyes had closed The day that Jesus wept. She leaves behind a legacy More precious that silver and gold, A love of life beyond belief, And a purity of soul. We will miss her presence, But be thankful for God's will, That He loved us enough To give us Jackie Lynn Caudill.
Cristina Administrator Head Butterfly member is offline
Joined: Mar 2005 Gender: Female Posts: 46 Location: California
IV Placement « Result #15 on Apr 20, 2007, 11:34am »
Tips for IV Placement
Before IV Placement - Make sure they know that absolutely no adhesives can be used on the skin. If possible, ask for a 24 gauge needle, I believe it is the smallest IV they have but they can't always use that one. Get materials ready to secure IV once it is in. Tell them to gently dab the alcohol on the skin, do not wipe.
Securing IV - There are different ways to secure an IV without adhesive. It's up to you. First have them put a small piece of gauze underneath the IV so it doesn't get pushed down onto the skin. I usually bring my own Conform wrap and they wrap around semi-tightly and tape the gauze to itself to secure it. Remember to tell them tape can be used only if it does not touch the skin. Another thing you can use is Coban. It sticks to itself but not the skin and can be used to secure an IV. The IV can still come loose so avoid too much movement or bending of the arm (assuming that's where the IV is) MORE TIPS ON SECURING THE IV COMING SOON.
Removing IV - Gently unwrap or cut away gauze and make sure someone is holding the IV in place so it doesn't jiggle too much and cause discomfort. Once it's all unwrapped they can place a piece of gauze over the site and pull out the IV while you apply some pressure with the gauze until any bleeding stops.
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