Activité récente dans la communauté Epidermolyse bulleuse

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  pansements entre les doigts
  topic, publié il y a 16 jours

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  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 ,

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  throat blisters
  topic, publié il y a environ 1 mois

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  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 ...

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  pansements entre les doigts des mains
  topic, publié il y a environ 1 mois

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  bonjour, je n'ai pas encore trouvé ce queje peux mettre la nuit entre les doigts de ma main pour éviter la fusion des doigts. Des petites compresses de gaze, ou des séparateurs de doigts en silicone, tout cela tombe pendant la nuit, quelqu'un a -t-il trouvé quelque chose de facile et efficace ? m...

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  Articles récemment publiés par Debra International
  topic, publié il y a environ 1 mois

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  Japon: Approche sur les cellules de moelle osseuse pour le traitement des plaies
  http://www.debra-international.org/fileadmin/editor/docs/PNAS_paper_pdf.pdf'

  Information
  http://www.debra-international.org/fileadmin/editor/docs/PNAS_paper_supplementary_info_pdf.pdf

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  EB wounds offensive to Facebook?
  topic, publié il y a 2 mois

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

  http://blog.ebinfoworld.com/?p=340

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  medical marijuana and EB simplex
  topic, publié il y a 4 mois

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  I have simplex EB and I am interested in medical marijuana for pain treatment and I am curious if anyone has any insight.

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  stuck on bandages
  topic, publié il y a 5 mois

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  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 wh...

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  DebRA Mexico Opening Ceremony and Christmas party (ES)
  document, publié il y a 6 mois

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  November 25-26th, 2011

  A sampling of pictures of the opening ceremony and Christmas celebration from the DebRA group of Mexico.

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  Last day of International EB Awareness week is today...
  topic, publié il y a 7 mois

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  This year saw even more countries participate with activities: http://www.mywalkamile.wildapricot.org/

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  International Epidermolysis Bullosa Awareness Week Announcement
  document, publié il y a 9 mois

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  IEBAW takes place October 25-31 each year

  Read this announcement for more details on how to get involved