Ever heard of catamenial pneumothorax? Probably not. It’s a collapsed lung which occurs in conjunction with menstrual periods. To raise awareness about this and about 6,000 other rare disorders, on Tuesday February 28 it’s Rare Disease Day.
In Europe, a disease or disorder is defined as rare when it affects less than 1 in 2,000 people. About 80% of the rare diseases have genetic origins. Often they are chronic, progressive and life-threatening. About half of them occur in children.
Also catamenial pneumothorax is on the list. It’s a collapsed lung which happens in conjunction with menstrual periods, a disorder which only occurs in women. Women who suffer from this condition, have an onset of lung collapse when they get their period: between 72 hours before and 72 hours after the start of their menstruation to be exact. Just like a lot of other rare diseases, it’s unclear what exactly causes catamenial pneumothorax. Some scientists believe it has to do with a type of Deep Infiltrating Endometriosis (DIE), endometriosis in the membrane surrounding the lung. It can be treated by surgical removal of the endometrial tissue and hormone treatments.
The objective of Rare Disease Day, which takes place every year on the last day of February, is to raise awareness about all sorts of rare diseases. It’s estimated that worldwide over 300 million people suffer from a rare disease or disorder. In the EU that’s about 30 million. Seeing as the diseases are rare, diagnosing them isn’t easy and neither is coming up with an adequate treatment. On Tuesday, 28 February 2016, the tenth edition of Rare Disease Day, all kinds of events are organised worldwide to raise awareness for uncommon disorders such as catamenial pneumothorax. This year’s theme is ‘research’; the slogan: ‘with research, possibilities are limitless’. For more information, look at the website: rarediseaseday.org.