Panel Discussion

The discussion after the presentation of Humprey, Joy and Mattija was above all based on the
following remarks and questions:

  • Children with EB, and it does not  matter which variation they have, should visit a "normal school", to get really integrated into the daily life of  children of their own age.  Sport lessons or other activities bearing risks for EB can always be avoided or making fit for these children. Give enough information; but be aware of the fact that not all the teachers are willing to give enough attention to extra care.
  • No matter what disability you have, trying to reach an utter independency is very important. Try to participate in all the common activities other people do, even if it can bring you some disappointments.
  • How can you, despite the encouraging stories of the 3 presenters' this afternoon, hold on to a positive way of living, if you hear all the sad stories about dying of SCC?
  • This knowledge forms is an enormous dark cloud hanging above your head, but it can also turn into a challenge to get the best out of your life as long as you can.
  • For parents of young children it can be very hard to agree upon putting barriers between taking good care and overprotection.
  • Should parents get involved in the changing of gauzes and bandages? Is it better to leave that to professional caretakers?
  • For the next international DEBRA-meeting, it is strongly advisable to give again a lot of attention to the quality of the life of children and grown-ups with EB.

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