Look at an acrobat and it’s hard not to be impressed by their extraordinary power and capacity. Stamina, discipline and agility are what we see as the foundation of prowess and are all attributes that deserve admiration. Sometimes, however, it is an illness that is concealed behind these “acrobatic abilities” rather than athletic capacity. The person in question becomes an acrobat against his will. Ehlers-Danlos syndrome is a rare hereditary connective tissue disorder which causes the breakdown of the body’s collagen composition. These inherent “abilities” are therefore not to be regarded as positive characteristics; in fact, they bring about a range of health problems. The symptoms of EDS are varied; for instance, it can lead to hyperelastic skin that can easily be damaged or to the rupture of internal organs and vessels. Ehlers-Danlos syndrome is to a great extent inescapable. EDS is a rare illness and is therefore largely neglected by scientific research. Diagnosis is difficult as some other connective tissue disorders (for example Marfan syndrome) bear a resemblance to EDS. EDS is therefore often not recognised until very late. Therapeutic measures mainly apply only to the treatment of symptoms. All of this makes it even more important to raise awareness of Ehlers-Danlos syndrome. It is above all children, adolescents and young adults as well as their parents and guardians in schools and preschools who are the focus of attention. Although they cannot be avoided, potential concomitant diseases/consequences of the illness can certainly be alleviated in terms of symptoms if EDS is dealt with appropriately. And even adult victims of EDS require more support in dealing with the illness. This brochure is intended to provide you with basic information about EDS, reveal causes and symptoms and, by means of a concise, standardised questionnaire, support the recognition and identification of EDS. Furthermore, existing therapeutic alternatives will be highlighted and insights into day-to-day life with the illness will be given.

Patientenratgeber EHLERS-DANLOS-Syndrom
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