Anyone suffering from a particularly rare disease is also called an "orphan of medicine." Due to their rarity, these diseases, which are usually chronic and often genetic, are rarely curable and little research has been done on them, and there is little information, medication and therapy available for patients.
On the occasion of the "Day of Rare Diseases", Prof. Dr. Hermann Girschick, Chief Physician of the Clinic for Pediatrics and Adolescent Medicine, will give a lecture on the clinical picture of "chronic non-bacterial osteomyelitis (CNO)".
This is a rare bone inflammation (osteo = bone, myel = marrow). The conventionally known osteomyelitis occurs when germs colonize a bone or its adjacent tissue (e.g. in an infected wound) and reach the bone via the bloodstream. The highest risk of infection occurs in open bone fractures. If pain and swelling do not subside and wound fluid is secreted after injury or surgery, or occur years after treatment has been completed, this may indicate bacterial osteomyelitis.
Diagnosis of this rare condition is complicated by the very fact that no bacteria are found at the site. It represents, so to speak, a rheumatic inflammatory disease of the bone.
The special thing about it is that pure "surgical remediation attempts" and therapies with antibiotics usually do not lead to the goal. However, anti-inflammatory drugs (painkillers, so to say) are of great importance in the therapy: this knowledge about the CNO disease can help to avoid unnecessary surgical interventions and also lead to a permanent cure.
About Rare Disease Day
The "Rare Disease Day", which has been proclaimed annually since 2008, aims to sensitize politics, society, research and medicine to the topic. Around 7000 diseases are counted among them, each of which affects no more than 5 in 10,000 people in the EU.
The ACHSE (Alliance of Chronic Rare Diseases) is the umbrella organization of more than 120 self-help organizations for rare diseases. Together in NAMSE (National Action Alliance for People with Rare Diseases), ACHSE works to sustainably improve care structures, information, and the research situation.