WHY – Acute aortic dissection (type A and type B) affects 3 to 4 persons per 100 000 inhabitants in Sweden every year, but there is a great number of unrecorded, since a lot of persons die at home not having made it to the hospital in time. – There is no time to loose when an aortic dissection occurs, says Gunnar Svensson, consultant doctor in the Thoracic Clinic at the University Hospital Sahlgrenska in Gothenburg.
Aortic Dissection is rare and difficult to diagnose. An early diagnosis is vital to prevent more deaths, and to minimize complications. Lifelong medication is necessary after an aortic dissection. Generally, hospitals do not have any written information to give to patients and family, who frequently remain ignorant as to what happened and do not grasp the situation. A drawing of what has been done to the aorta might be the only information provided. Questions are many which can cause anxiety, depression etc. Our main task is to spread awareness and consciousness about AD, which will result in a more positive view and hope for the future.
This is why we started the Project Consensus / Hope.
PURPOSE – To increase awareness of AD, spread knowledge and give hope, and as a consequence contribute to reducing the mortality rate.
WHAT – Aorta Dissektion Föreningen Skandinavien was founded on 19th September 2014 as the world’s first patient organization, by 17 survivors living with the rare aortic dissection disease. Now, two years later, we are over 130 members in the association, of whom over 90 are diagnosed carriers. The main diagnosis is the rare Aortic Dissection. However, those with an aortic aneurysm, or having dissections in arteries connected to the aorta, are also welcome to join us as diagnosed carriers. Family, as well as persons who wish to support somebody, or they themselves looking for support, can also become members. More information is found on our home page http://aortadissektion.com.
The association’s anniversary has become the Wolrd Day of the disease aortic dissection, Aortic Dissection Awareness Day – September 19. The association, since 2014, is a member of the National Association of Rare Disorders (Sweden) (http://sallsyntadiagnoser.se) and since January 2015 Eurordis (Europe) (http://eurordis.org). We are also present on social media.
HOW – By organising gatherings at University Hospitals for survivors and health professionals. It is all about giving and taking information and results in a win-win situation. Through self help groups organizing lunches, coffee mornings, walks or other events, will further spread awareness and consciousness about AD. To organize lectures where e.g. a thoracic surgeon informs about what happens during possible surgery, aftercare at home etc. On 28th February, Rare Disease Day, events are being held, and further gatherings will take place during summer, and on 19th September another reunion will take place at Ågrenska outside Gothenburg.