In Germany, an estimated 1,600 people are affected by the rare hereditary disease hereditary angioedema (HAE), but the number of unreported cases may be significantly higher. In patients with HAE, chromosome 11 is mutated; this genetic mutation leads to a C1 inhibitor deficiency, the body’s own plasma protein. This results in recurrent swelling of the skin, mucous membranes and internal organs, which can be life-threatening under certain circumstances.
Help raise awareness step by step
HAE is treatable with medication. However, the rarity of the disease means that HAE often goes undiagnosed or is diagnosed late. Early detection of the disease protects and makes life easier for both those affected and their families.
HAE International, an association of all HAE patient groups, has created HAE Day to raise awareness of both the disease and the people who suffer from it. To do this, the association organizes the annual “HAE Global Walk”. The motto of this year’s walk, which is undertaken by people from all over the world, is “help raise awareness step by step” and seeks to raise awareness of HAE among the public and the medical community.
Michael Schröder, Site Head of CSL Behring in Marburg, is also taking part: “We love getting involved in the campaign. Together, we want to raise awareness for this rare disease and pave the way for more accurate diagnoses and better care for all patients worldwide.”
The results of all the walks worldwide will be posted on the central HAE Day website. Of course, the walks will take place in compliance with general COVID-19 safety precautions.
The symptoms of HAE often resemble those of allergies, irritable bowel syndrome or food intolerances, which is why the condition is often confused with them. However, HAE can be clearly diagnosed using a blood test. If you suspect that you or someone in your family or circle of friends suffers from HAE, you should contact your doctor. Further information and points of contact can be found in the links below.
www.hae-erkennen.de (German only)
Experience sharing and networking
The German patient organization HAE Vereinigung e.V. has been providing valuable support, actively raising awareness and promoting exchanges between those affected and their families for over 20 years.
www.angiooedem.de (German only)