dressings between the fingers of the hands

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  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

  • 
    Butterfly published 5 months ago | Originally written in French

    desolée, mon Francais N'est pas très bien. Mais en Allemagne on a des gants specials pour les patients avec EBD. Je peux t'envoyer des photos si tu veux. Aussi tu peux simplement utiliser des bandages entre les doigts et travailler avec du "Mepilex". Ma fille a EBD, elle a quinze ans et ella a des "splints" qu'elle porte chaque 2. nuit. Aussi, si tu veux des photos - pas de problème. It would be easier for me in English or German. All the best.
  • 
    poorskin published 5 months ago | Originally written in French

    Thank you Butterfly , we can speak english if it is easier for you. If you can show me some pictures, it is interesting . I had never did that before, but now my Dr says it is very important because slowly my fingers become shorter .. merci beaucoup, à bientôt
  • 
    Butterfly published 5 months ago | Originally written in English

    Hi poorskin, nice to hear from you so soon. I am new to the forum (as from today) and I do not know how to upload pictures. Can you help? Back tomorrow afternoon. à bientôt. Butterfly
  • 
    poorskin published 3 months ago | Originally written in English

    hello Butterfly , no problem if you cannot put photos of the special gloves, but could you tell me the internet address where I can order these gloves, I heard we can get them on internet , but ..where ? thank you for the help
    Poorskin
  • 
    elleam published about 1 month ago | Originally written in French

    I am the father of a 18 months girl affected with RDEB (absence of collagen 7). Her fingers do not retract, there is no beginning of melting. But I want to learn about this upcoming eventuality and would be interested to learn more about the possibilities to separate the fingers.
    Furthermore, I ask myself many other practical issues and will wish to talk further to you.

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