Undiagnosed and rare conditions
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Community updates


• Read over some of our recent discussions and have your say!

• Upload a new profile picture and give your profile a personal touch.

• Get the latest information on issues relating to coronavirus.

Epidermolysis Bullosa

MehaveEBMehaveEB Member Posts: 1 Listener
Hi there, i suffer from Epidermolysis Bullosa, it's a genetic blistering skin disease. I am in the process of claiming PIP and have a Tribunal hearing next month. Worrying myself silly. Never met any other folk with my condition, so if there is anyone here who is a fellow sufferer please say hi. Thanks.

Replies

  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @MehaveEB, and a warm welcome to the community. Great to have you here! Would you like to tell us a bit more about your condition?

    Wishing you all the best for your tribunal. Many of our members have been through the process themselves, so do feel free to ask any questions and we'll do our best to advise. 
  • Ami2301Ami2301 Community champion Posts: 6,603 Disability Gamechanger
    Hi @MehaveEB welcome to the community! :)
    Community Champion
    Disability Gamechanger - 2019
  • underdiagnosedunderdiagnosed Member Posts: 23 Courageous
    Hi, I was just wondering if we had met before, as I am aware how rare EB is. I used to help with adapted sports sessions many years ago - big ball football, boccia, and wheelchair basketball, and there was a 6 year old boy with severe EB. I often found myself helping him and his mum and would sit in the bar afterwards talking to them. I was wondering if it might have been you and if so was wondering how you and your mum are?
  • underdog4underdog4 Member Posts: 8 Connected
    Hi MehaveEB I have just seen this forum and joined today. I have suffered from Epidermolysis Bullosa for a long time Thankfully it only affects both my lower legs from the ankles to the knees with constant blistering and skin splitting sometimes for no reason. I am receiving Pip after being awarded disability benefit some years ago. I saw your question and alow it was some time ago, I was wondering if you succeeded in making a claim. As I'm sure you know, there is also a lot of complications with having this disease apart from the obvious pain such as feeling very depressed at times, very limited mobility and even sometimes not able to go to bed as oozing can stain bedclothes all which you need to describe to an assessor. Anyhow, I hope you were as successful in your claim as I was. Bye

Sign in or join us to comment.