ACUTE AORTIC DISSECTION
Aortic dissection is when the inner layer of the main bloodvessel in the body, the aorta, is broken from various reasons, and blood starts purshing into the middle space between the inner and outer layer of the aorta causing them to separate, and making the aorta swell like a balloon. If not treated in time this may cause the aorta to burst (rupture). Medscape writes “Aortic dissection is the most common catastrophe of the aorta. When left untreated, about 33% of patients die within the first 24 hours, and 50% die within 48 hours. The 2-week mortality rate approaches 75% in patients with undiagnosed ascending aortic dissection.
FAMILIAL AORTIC DISSECTION
ORPHA229 lists “Familial Aortic Dissection” as a rare disease in Orphanet. “…Familial aortic dissection is the term used to describe rupture of the aortic wall at the level of the media, resulting in the formation of a false channel and deviation of part of the aortic flux. Familial predisposition to thoracic aortic aneurysms and type A dissections (concerning the ascending aorta and/or the aortic arch) has been demonstrated in around 19% of patients presenting with thoracic aortic dissections and several loci have been identified so far…”
A RARE DISEASE OR RARE DISORDER
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
RARE DISEASE DAY 2016 – FEBRUARY 29
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
AORTIC DISSECTION AWARENESS DAY – SEPTEMBER 19
The global Aortic Dissection Awareness Day takes place on September 19 each year. The main objectiv of Aortic Dissection Awareness Day is to raise awareness amongst the general public and descision-makers about aortic dissection and closely related diseases and disorders, to improve awareness about how and when to look for a diagnose of the disease, and thereby help saving lives.
There are two big global awareness days for us living with the rare disease aortic dissection. The last day of february – is the global RARE DISEASE DAY – when people in almost 100 countries all over the globe raise awareness for all of us living with rare diseases. September 19 – is our specific awareness day – for our rare disease. So far friends from 22 countries around the globe has said they will participate in creating joint awareness four our disease.