Epidermolysis Bullosa

MehaveEB
MehaveEB Online Community Member Posts: 1 Listener
edited January 2019 in Rare, invisible, and undiagnosed conditions
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.

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    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. 
  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    Hi @MehaveEB welcome to the community! :)
  • underdiagnosed
    underdiagnosed Online Community Member Posts: 31 Contributor
    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?
  • underdog4
    underdog4 Online Community 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
  • Fleur862005
    Fleur862005 Online Community Member Posts: 2 Listener

    Good afternoon everyone,

    we are students at the Erasmus University in Rotterdam (Netherlands) We are doing research on a project about communication and participation for Epidermolysis bullosa care en related activities. We made a survey with questions which will only take 10 minutes of your time. The link is completely safe and your answers will remain anonymous. Your contribution is crucial for our research!

    https://www.survio.com/survey/d/V8N6R9I3R8I7P7U9E

    Thank you in advance!

    Kind regards, the students of Erasmus Univeristy

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