The phenomenon of rare diseases

Leipzig University Hospital informs about rare diseases

28/02/2014

On the occasion of the Today of Rare Diseases, the Leipzig University Hospital informed about the peculiarities of these unusual diseases and made it clear that in Germany alone several million people suffer from such diseases. Although the individual diseases are rare on their own, experts generally know about 7,000 rare diseases. In order to improve the care of those affected, a special center for rare diseases is to be set up at the Leipzig University Hospital.

As rare diseases are defined in Europe diseases in which no more than five in 10,000 people suffer, reports the University Hospital Leipzig. „ These include, for example, arginine succinic acid disease, Osler's disease and deletion syndrome 22q11“, so the message of the hospital. These are usually very serious illnesses „Both for the patients and for their families are associated with high loads and lead in part to the death in childhood or adolescence.“

Almost half of the patients with a rare disease
At the University Hospital and Polyclinic for Paediatrics and Adolescent Medicine Leipzig suffers, according to information de hospital „Almost every second patient has a rare disease.“ The clinic director Professor dr. Wieland Kiess explained that „These are often very serious illnesses that require interdisciplinary treatment and extensive care.“ In Leipzig University Hospital affected children and adolescents are in good hands. The hospital offers maximum care and has numerous experts, „which track down the cause of the disease in close cooperation and choose from the possible treatment options that are most successful for each patient“, explained Professor Kiess. The physician further explained that in future the interdisciplinary care of patients with rare diseases in Leipzig „be taken to a new level“ should. Here, with the involvement of various disciplines, preparations are already underway to set up a special center for rare diseases. „The rare diseases usually have their beginning in childhood. Therefore, it makes sense that such a center is designed by the pediatric and adolescent medicine“, emphasized Professor Kiess.

In the past, those affected would simply have died
While 100 years ago, children often died from hunger and infectious diseases, this has diminished as prosperity and health care improve. But new common diseases such as cardiovascular diseases, cancer, obesity and allergies have been added, which also represent a health risk that should not be underestimated, reports Professor Kiess. „The prosperity has not only produced the common diseases, but also allows today, children and adolescents with very different and very rare diseases come to us and can be treated“, so keep pouring. 100 years ago, those affected would, according to the expert „just died without realizing what they had.“ With the planned care center, Professor Kiess hopes once again for a significant improvement for the affected patients.

Cooperation in the treatment of rare diseases
Although a single center could not cover all 7,000 rare diseases, but here grab the „Association of all experts, throughout Germany and Europe“, explained Professor Kiess. By way of example, the doctor named a family with a one-year-old child, who is admitted to the Leipzig University Hospital because apparently constantly groundless illnesses occur. This child is hospitalized by a pilot, a highly experienced pediatrician, and the doctor immediately initiates the next steps „from the involvement of colleagues in human genetics and laboratory medicine to the deployment of experts from all clinics and institutes of the University Hospital“, range, explained Professor Kiess. In addition, will keep an eye on whether „In another center there is a specialist who is very well versed in this very special disease“, the doctor continues. In such a case, this absolute expert would also be involved. „That too constitutes a center for rare diseases“, emphasized Professor Kiess. (Fp)