Hi every body. Thanx Lindsey Evans and Admin for adding me and thanx for everybody in this great group. I have rare kind of EB me and 3 of my brothers, We did genetic test and they found rare genetic mutation ( we have one gene affected with RDEB and the other gene affected with DDEB ) The severity in the symptoms are completely different from each other me and my little sister have big chronic non healing wounds on our back and nick and shoulders. We were have insurance and we were can buy the bandages as Mepilex transfer ,mepilex lite, roll gauze, Aquaphor and honeymed. But now we dont have insurance and we cant offer our supplies we have to change the bandages daily and we still have just a few. My question is, do you know any places or anyone can help us to get these required supplies ?? We cant offer these supplies as you know without insurance its impossible to offer these supplies because its too expensive. Because the wounds is too big we use a big size from : Mepilex transfer ( 20 x 50 cm /8×20 in ) Or Mepitel ( 20 x 30 cm/ 8 x12 in ) and Mepilex lite ( 20 x 50 cm /8×20 in ) and Roll gauz ( 4.5 in x 4.1 yds ) You will see down pics from my wounds and my sister wounds that have never been healed. Im sorry about the pictures I now its horrible, But this is our life and I feel comfortable to share our pics to you because I know every body in this group know whats the EB do and what the EB patient feel and its a private group. Thanx alote for everybody in this great group its useful group and good place to share and to discuss every thing regarding EB. :)
Posted on: Mon, 17 Nov 2014 21:36:32 +0000