Living with Disease

Around 15 percent of all students attending public school suffer from chronic diseases - allergies, asthma, heart problems, diabetes, epilepsy, or one of a wide variety of more rare diseases. Often, schools do not make allowances for the special needs of sick children. In addition, switching from their regular school to a school operated by the clinic where they receive treatment is also quite taxing: during their stay at a clinic, they lose contact with their regular school, and afterwards have difficulties getting back into the normal swing of things when they return.

The foundation-supported “Interklinikschule” project carried out by the PH Ludwigsburg University of Education and the University Children’s Hospital Tübingen initially studied the situation of children with chronic diseases at school and developed informational material for teachers. The support we are now currently providing is geared toward schools’ administrative departments and initial and advanced training for teachers. The “School and Disease” project in Berlin-Brandenburg is examining the academic careers of children with chronic diseases, and the project is aimed at finding out what training and advice teachers need to improve their ability to teach children suffering from chronic diseases.

According to the EU’s definition, a disease is considered rare when less than 5 out of 10,000 people exhibit the specific symptoms of the disease. More than 5,000 rare diseases exist, and in Germany approx. four million people suffer from a rare disease. Most rare diseases are chronic, and 80 percent are hereditary. Information on rare diseases is not readily accessible, and as a result, doctors and those afflicted are not very knowledgeable in this area. Such diseases are often diagnosed too late, and in many cases, after the diagnosis is made it can take a long time until the right therapy and an adequate level of care is found.

In the project we are supporting entitled “Improving Information on Rare Diseases” carried out by the Allianz Chronischer Seltener Erkrankungen e.V. (Alliance of Chronic Rare Diseases Association, also known as ACHSE), the descriptions of these diseases are systematized and prepared in a patient-oriented manner.

For teenagers suffering from chronic diseases, the move from pediatric to adult medical care is an especially critical phase. Up until now, in this phase around 30 percent of those afflicted lose their connection to the medical care they require and only establish contact again when complications arise, whereby these complications could have often been prevented entirely. That’s why the Robert Bosch Stiftung is supporting a project carried out by the DRK Kliniken Berlin-Westend that is developing and testing a concept to accompany patients through this transitional period, giving it a better structure.

Depending on the disease from which they suffer, when released from pediatric care due to reaching the age limit, many teenagers also end up with a complete absence of health care if a comprehensive network of specialized clinics and doctor’s offices doesn’t exist and general practitioners aren’t sufficiently qualified to provide care. With the “Adults with Congenital Heart Defects” project at the University Hospital Münster, the foundation is supporting the introduction of an accredited additional qualification for cardiologists, pediatric cardiologists, and heart surgeons, with the goal of expanding the network of experts over the medium term.

Supporting and comforting seriously ill and dying children and their families is one of society’s important duties. Inpatient and outpatient facilities are being built nationwide that offer affected families professional care and support. The Robert Bosch Stiftung supports projects providing children’s hospice care in Stuttgart and the Allgäu region, supports the “Bunter Kreis” model created by the beta Institute in Augsburg, which is establishing a concept for providing outpatient post-operative treatment nationwide, and also supports a project dealing with chronic pain in children and teenagers at the University of Witten-Herdecke.