Conversations

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  poorskin | published 5 months ago | Originally written in French pansements entre les doigts

  Thank you Butterfly, yes we can speak english, yes if you can show me some pictures, , it should be interesting, I never did that before, but now the doctor says it is very important because slowly my fingers become shorter .. merci beaucoup ,
  One reply to the topic — see all replies

  • 
    Butterfly published 15 days ago | Originally written in English

    sorry poorskin, I tried to answer that but I cannot manage to send pictures via this forum. Please contact me by email. Best wishes - butterfly
• 
  diamonds | published about 1 month ago | Originally written in English throat blisters

  i need somebody's help immediately. i need help on blistering in the throat that comes with eb.My girlfriend has severe blistering in her throat and has not eaten in apporixamtely 3 weeks. She can only drink cold liquids on occasion, and we are lucky to get those down on a good day. She has lost about 15 pounds and is still declining, which leaves her at around 80 something pounds. We have tried doctors and emergency rooms, and they always send us away telling us she is faking it for attention, they wouldn't even hook up the IV to hydrate her at the very least. We need answers on how to treat this very fast before it gets even more serious. If anyone has any information to offer we would be very grateful.
  14 replies to the topic — see all replies

  • 
    diamonds published about 1 month ago | Originally written in English

    Dear Gena
    Thank you for sharing your concerns, I will contact you tonight via email.
    Sincerely,
    Diamonds
  • 
    Gena published about 1 month ago | Originally written in English

    If you wish, please feel free to phone me this evening before 11. I am at 226-448-3412, that is my cell number.

    Gena
  • 
    MelissaJoSmith published about 1 month ago | Originally written in English

    Diamonds,

    You are very welcome. I truly wish I could do more. At times when I've had damage in my oesophagus, I've had a short course - maybe three or four days' worth - of low dose steroids. Usually Prednisone. And it really does help to heal the damage faster. Just my experience, though.
    I so hope that your girlfriend improves very quickly, for hers and your sake.
    Without any intent of being patronising, I truly think it's amazing that at the age of 17, you are so concerned for your girlfriend's health, and so desperate to help her however you can. I'm 25, and 90% of guys my age and older are terrified of committing to someone who needs help.
    Please always come back with any questions; we all do our very best to help.

    All the very best,
    Mel
• 
  poorskin | published 6 months ago | Originally written in French dressings between the fingers of the hands

  hello, I still have not found what I can put between the fingers of my hand at night to prevent the fusion of the fingers. Small gauze compresses or silicone finger separators all fell during the night, has someone found something easy and effective? thank you!

  Notice: This text content has been translated automatically by a third-party service.

  8 replies to the topic — see all replies

  • 
    poorskin published about 1 month ago | Originally written in French

    Bonjour Elleam, il me semble que mon message n'a pas fonctionné, je suis tout à fait d'accord de dialoguer avec vous , vous pouvez me poser d'autres questions ou me donner une autre adresse email comme vous le préférez, , à très bientôt de vous lire
  • 
    elleam published about 1 month ago | Originally written in French

    Mon adresse mail est la suivante : dan-philippe.youx@orange.fr
  • 
    poorskin published about 1 month ago | Originally written in French

    bonjour Elleam , j'a envoyé un email à l'adresse que vous m'avez indiquée, vous pourrez donc m'envoyer de plus amples questions pour votre petite fille, nous pourrons remettre des réponses qui peuvent etre utiles à tous sur ce forum, Je vis avec mon EBDR depuis ma naissance ., j'attends que vous m'écriviez , bonne journée !
• 
  robpleticha | published 5 months ago | Originally written in English Recently published articles from Debra International

  Japan: Bone marrow cells approach to wound treatment
  www.debra-international.org/fileadmin/edit...

  Supporting information
  www.debra-international.org/fileadmin/edit...
  5 replies to the topic — see all replies

  • 
    elleam published about 1 month ago | Originally written in French

    Bonjour,
    Je me suis mal exprimé. Ce n'est pas une difficulté à lire un texte en anglais, mais une diffuclté à ouvrir le fichier informatique lorsque je clique sur le lien www.debra-international.org/fileadmin/edit... Celui-ci ne s'ouvre pas. Sinon, je comprend très bien l'anglais.
  • 
    AllieFreitas published about 1 month ago | Originally written in French

    Désolé pour la confusion. Je vois la façon dont le premier lien ne fonctionne pas. Le deuxième lien semble bien fonctionner. Je vais communiquer avec Rob et voir si nous pouvons résoudre ce problème. Merci de nous dire.
  • 
    elleam published about 1 month ago | Originally written in French

    Le 2ème lien fonctionne très bien. Merci beaucoup !!!
• 
  robpleticha | published 7 months ago | Originally written in English EB wounds offensive to Facebook?

  Blog about a mother who got her Facebook account suspended for posting pictures of her son's everyday life:

  blog.ebinfoworld.com/?p=340
  One reply to the topic — see all replies

  • 
    nordnurse published 2 months ago | Originally written in English

    Unbelievable!!!

    I've just seen this post (sorry -- I know I'm four months late !) -- and am stunned!

    I've known this mom, Sylvia, for years -- she is beyond decent, a one-of-a-kind wonderful, brave devoted mother who is doing her best to raise awareness about EB.

    Shame on FB!
• 
  freebeard | published 6 months ago | Originally written in English medical marijuana and EB simplex

  I have simplex EB and I am interested in medical marijuana for pain treatment and I am curious if anyone has any insight.
  3 replies to the topic — see all replies

  • 
    zmatija published 6 months ago | Originally written in English

    Hi, I have been using marijuana for several years, it is very good for pain treatment, digestion and even eye pain. There is a lot to be said about marijuana, so if you need any further insights don't hesitate to ask.
  • 
    Mick published 4 months ago | Originally written in English

    Does having our med card limit our job opportunities even more? I know we r limited already bcuz no1 likes to hire cripples, ( harsh but true) But does having our card on top of that make it THAT much difficult?
  • 
    zmatija published 4 months ago | Originally written in English

    honestly, I don't now, and don't care.. Our employment system have little sense of patients, and it is a completely different world from EU or US...
• 
  Butterfly | Medical treatments that worked for me | published 5 months ago | Originally written in German stuck on bandages

  I would like to recommend all EB patients to use the Niltac spray, if bandages or similar things has been stuck on skin unintentionally or intentionally (e.g.after an emergency surgery).

  Niltac is a silicon spray and it removes bandages fast and easily. I just had a member of Debra Germany who had an emergency surgery in a hospital. Afterwards he had large bandages on his belly and chest, which he couldn´t remove again, without injuring large parts of his skin.

  With Niltac spray it could be removed without skin injuries and I was very happy today, to hear that from him.

  Merry Christmas to all of you and a Happy New Year 2012

  Butterfly

  Notice: This text content has been translated automatically by a third-party service.