Innovations From Member Groups

Frank Houben, Arnhem

Frank Houben, (DEBRA the Netherlands) one of the organizers of this congress, gave information about the ambitions of DEBRA International. Because of the rarity of EB, it is one of these ambitions of DEBRA International to share ideas, solutions and knowledge among each other. To stimulate an exchange like that, all participants were asked to send their suggestions to Frank Houben.

A few of these ideas are reproduced here:

  • People with EB and reduced hand ability have difficulties to open a door with a key that have to be turned. But there are possibilities to use a remote control to get inside.
    More inquiries: Sabine.daby@googlemail.com
  • Countries wit no real ( financial ) ways to supply EB-patients with the needed bandages and gauzes can perhaps be helped by using plastic foil: it can be a cheap and easy to obtain way of healing (not infected) wounds.
    If you want to know more: Lauradesena@hotmail.com
  • Special gloves:
    There are special gloves to protect the delicate hands of EB-patients. The gloves, have a resemblance with the gloves cyclists use, but the seams are flattened and soft. The gloves are available in different sizes, colours and, on demand, in thinner and delicate material. The gloves protect the hands of children and grown-ups doing their daily activities. Hands in gloves give less opportunity to get embarrassing remarks than bandaged hands mostly do.
    More information: Sabine.daby@googlemail.com.
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  • Cannabis and pain-management:
    Bor Verkroost (RDEB) informed the audience about his moderate use of medical Cannabis. It reduces pain, en stimulates appetite .It is a much more pleasant and a less benumbing experience than the use of opium based medication. For people who absolutely don't want to smoke (and of course in this case it concerns grown-ups) there is now a choice to use a vaporizer ( an electronic kind of water pipe)
    In the Netherlands several experiments with this kind of inhaling Cannabis are happening now. Arno Hazekamp, pharmaceutical researcher at the University of Leiden and since 5 years studying the use of Cannabis as a medicine, states: "This vaporizer forms a bridge between this medicine and the patient
    More inquiries: florisleeuwenberg@gmail.com, info@1-up.nl (Bor)
    Have a look at:  www.vaporizerblog.com (English-spoken blog)
  • To prevent unnecessary rubbing:
    An idea of Frank Houben; he benefits a lot from this idea: he wears two pair of thin socks to prevent rubbing, and so causing blisters while walking.
    If you want to know more: frank@frankhouben.nl
  • Holidays in Marbella:
    DEBRA Espagna can offer a chance to have a holiday in Spain for EB-Patients and their partners/family, in a special accommodated apartment in Marbella.
    More inquiries about this possibility: info@debra.es
  • Also an idea coming from Spain:
    A suit of tender and soft material, used instead of bandages .It reduces the hours of being treated and stimulates the independency of the patients.
    Mail for more inquiries and images of this suit to: info@debra.es
  • Stabilizing the opening of the mouth.
    Problems in oral treatments. In the case of anesthetization, but also according to taken care of by the dentist, the opening of the mouth, because of EB getting too small, can become quite a problem. With the assistance of a dental technician a special device was developed, suitable to be used quite independently by children.
    More information: sabine.daby@googlemail.com
  • The application of Apligraf after surgery
    Apligraf on wounds of persons affected by EBD has repeatedly proven to support rapid healing of the treated areas. This observation applies to acute wounds following surgery, as well as chronic wounds with poor healing tendency. On addition to this, the application of Apligraf on the wounds immediately following hand surgery leads to significant reduction of pain in the treated area.

(Apligraf® Organogenesis, MA) is a bi-layered bio-engineered skin substitute and was the first engineered skin US Food and Drug Administration (FDA)-approved to promote the healing of ulcers that have failed standard wound care. Apligraf provides both cells and matrix for the nonhealing wound. Its exact mechanism of action is not known, but it is known to produce cytokines and growth factors similar to healthy human skin.
    Inquiries: kristin.kernland@insel.ch

The meaning of this session was also meant to show how valuable it is, to tell others of your ideas and solutions. DEBRA International is THE international platform to give us the opportunity to share knowledge and ideas.

Frank Houben hopes that DEBRA International can create a way of showing all the ideas in, f. e. a website. In this way it is easily accessible for all the DEBRA' s  and can be a source of  inspiration  for everyone. The session is also an appeal to all the countries here assembled to share all the knowledge and make it available for all of us. "We share a mission , so let's share also all our knowledge to fulfil this mission."

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