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Information for concerned, patients and member
Epidermolysis bullosa (EB) is a hereditarily contingent skin disease with which it can come spontaneously or already in easy contact of the skin to bubble development. According to type of the disease, the skin can more or less be sensitive. The increased bubble development realization through the deficient anchorage of the upper with the skin layers lying under that. Responsibly for that a defective or missing gene, that drives the development of the protein important for this, is. It gives different procedure wise, possible make the one präsise diagnostics and classification of the EB-Typs (blood analysis and antigen Mapping). The treatment of the disease results presently symptomatic, i.e. reduction of the skin irritation, provision of the wounds emerging by the bubbles, pain therapy etc.
The clinical picture of the Epidermolysis bullosa
Already in slight mechanical load, the skin tends reinforces lacking anchorage at hands and feet, as well as at the mucous membranes (z. B. in the mouth and in the eyes) and in the digestion area to bubble development. These bubbles can filled with bubble fluid or blood its - according to depth of the concerned skin layer. Deeper layers are concerned, the Abheilung of the wounds emerged through it leads often to the scar development and if necessary to Verwachsungen, that can stipulate also contract original (z. B. at hands and feet).
EB simplex takes usually a mild progressive form. The Abheilung of the bubbles results as a rule without scar and Hautatrophie. In the childhood, usually more bubble development steps on than in the adulthood.
In EB junktionalis, there are both mild and early letale forms. Here usually also a scar loose Abheilung is observed whereby however frequent Hautatrophien can appear.
EB dystrophica can take mild or heavy progressive forms. A scar loose Abheilung results very rarely because the lower skin layers are concerned by the bubble development. In heavy progressive form, it can come to Mutilitation of the hands and muscle contract original based on strong Vernarbungen.
External cannot be recognized the plain of the bubble development in the skin. Therefore secondary symptoms are important in the diagnosis of the EB.
The treatment possibilities of the Epidermolysis Bullosa
Because the group of the Epidermolysis bullosa diseases can concern next to the skin in single lower forms also many other organs, a collaboration of patient is, whose families, different medical occupation groups and a row of specialty disciplines to the joint care necessarily. In the mild EB forms is however frequent a care through the family and the patient self sufficiently. In many a cases, the daily care must be received by specialists. Beside it for example the children medical and skin medical care is, jointly with the family doctor, indispensably. In many cases, specialized dentists, Gastroenterologen, surgeons, orthopedists must be consulted jointly with physiotherapists, dietitians, social workers, psychologist etc. Only so an optimal care can be reached in partially complex problem situations. Such an "interdisciplinary therapeutic extension" (interdisciplinary management) needs a good coordination that is to be realized on the spot, partially however also only in specialized centers.
Although it gives until today no causal therapy and no healing, a stabilization and clear improvement is to be obtained yet in many problems and in many situations. In many a cases, a premature therapy can avoid help certain problems also. In the everyday life, symptomatic therapies in the foreground stand.
You find further information to the treatment also under the specialty information. We recommend you to get in touch in all vagueness with the looking after physicians, therapist and care powers.
Dr. Meral Julia Arin
Klinik und Poliklinik für Dermatologie und Venerologie
Klinikum der Universität zu Köln
Frau Dr. med. M.-L. Preil
36364 Bad Salzschlirf
The TOMESA-Fachklinik for dermatology, allergy, orthopedics as well as rheumatism in bath Salzschlirf is one of the largest German rehabilitation clinics. TOMESA, also named is "the dead sea in Germany" well known for its special Balneo-Phototherapie, with which the light ratios and water ratios of the dead sea are adjusted and are optimized for the therapy. The therapy in the TOMESA-Fachklinik, bath Salzschlirf is integrated and interdisciplinary. Especially Balneo-Phototherapie, UV-Lichtbehandlungen, ointment treatments, physical therapies, psychological care, nourishment consultation, Gesundheitsaufklärung- and training, Ergotherapie are basis of the treatments and rehabilitation consultation. The TOMESA-Fachklinik treats especially chronic skin diseases as well as psoriasis, atopische Dermatitis, Ekzeme and Vitiligo. For many years the clinic however also focal point in the diagnostics and treatment of hereditary skin illnesses as well as z has been. B. genetically contingent Verhornungsstörungen (z. B. Ichthyosen) and blasenbildenden diseases of the skin (z. B. Epidermolysis bullosa). The TOMESA-Fachklinik cooperates with the aqualux-Gesundheitszentrum. Here a practice clinic for aesthetically-plastic surgery and cosmetic dermatology, a Health- and Beauty-Schönheitsfarm with wellness-offer and the aqualux wellness hotel and conference hotel is. The focal point for Epidermolysis bullosa became manifested Dr. med of the former superintending doctor and medical director of the TOMESA prof. Wolfgang sexton who suddenly died at the 24.07.2006. For many years Mr. prof. sexton has dedicated himself also as a medical adviser of the interest group Epidermolysis bullosa e. V. the diagnostics and therapy of this disease group. Since October 2003 it has been with woman Dr. med. M. -L. Preil as a clinical center for diagnosis and treatment for patients with EB as projects 03 of the network actively. Woman Dr. Preil continues the activity as a present project leader seamless in the sense of prof. sexton. First of all woman was Dr. med. M. ax-Gadermann as an interim-superintending doctor of the TOMESA-Fachklinik actively, since middle October is Mr. Dr. medic Remus Vasa medical director of the clinic. Since January 2007 a cash register medical authorization has existed for transfer so that a transitionless care is given also by ambulatory patient of legal health insurance companies after transfer to the Konsiliaruntersuchung by an established dermatologist. Woman Dr. Preil will be active intervening of the 01.04.-30.09.2007 in the university skin clinic Freiburg. It will stand nevertheless regularly for questions with ambulatory and stationary EB-patient in bath Salzschlirf to decree. Appointments can further M over the superintending doctor-secretariat woman. shepherd (06648-55-712) arranged become for the office hour of Dr. medic R. Vasa.
The EB center of the university skin clinic in Freiburg offers different offers for EB-patients, concerned families, looking after family doctors and pediatricians however also for specialized centers, Neonatologien, skin clinics and involved care and therapist.
There is the possibility an ambulatory or part stationary presentation with which we budget as a rule a mehrstündigen appointment. Beside it also stationary receptions are after arrangement possible, an intensivmedizinische or neonatologische care unfortunately not yet can be offered. Because the problem fields can be very multifarious in EB, we strive for a collaboration with most deceased medical and therapeutic disciplines and advertise here at the university clinic Freiburg for a so-called "interdisciplinary management". We my therewith the participation of all disciplines here in Freiburg and coordinate the collaboration and the exchange in the frame of the EB-office hour. A good cooperation exists already with the children clinic, that hand surgeries, that tooth clinic, that eye clinic are and further contacts in the construction. An essential element remains however the support of the physicians and therapist in the homeland near background. We offer therefore also by telephone or e-mail next to the information of these Web-sites information been based.
The diagnostics offered here comprises offer the analysis by skin biopsies by means of Antigenmapping, in different genes we the molecular gene tables Typisierung of the gene defects above all the EB dystrophica and EB junctionalis forms on, that is carried out in collaboration with the local humane genetics. For the EB simplex gene analyses, cooperations with the universities skin clinic in Cologne and with laboratories in salt castle and Philadelphia exist.
Further focal points of the EB-center Freiburg are the investigation of the causes, the diagnostics, the prevention, the wound provision and the development of new treatment possibilities for Epidermolysis bullosa.
In order to can all this guaranteeing, the team of the university consists skin clinic of doctors physicians, care powers, secretary, biologist, therapists therapist, Laborantinnen, scientific auxiliary powers and students.