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Aortic Dissection is a very rare disease. About 30 persons out of a population of one million (1.000.000) get ill...

Shared by Timo Söderlund on 2014-10-09 13:21

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Aortic Dissection is a very rare disease. About 30 persons out of a population of one million (1.000.000) get ill every year. It is said that about 80% of them dies within short after having fallen ill. Either immidiatley if the Aorta ruptures before they get into hospital, or from the same cause, while doctors in the ER are trying to find the proper diagnose. So the survivors of this lethal rare disease are very very few. This is one reason there are no offical patient association like there is for other a little bit more common (but still rare) diseases like Marfans Syndrome. The Internet has opened up new possibilities for people to meet from all over the globe. And it is known, that the comfort that can be given from people (friends) sharing the same lethal disease you self carry, can give enormous mental support and comfort, and make life better for the patient. I know, since I am one of them (I had acute AD type A , 1 october 2012 - and survived a complicated surgery, with new heartvalves, a graft to replace my ascending aorta, a permanent pacemaker to run my heart). There is today an open group on facebook with over 500 survivors from all over the world. (US, UK, Sweden, Denmark, Norway, Belgium, New Zeeland, Austrialia etc). We all live close to death, but beeing part of this community has improved the lives of many, including myself. https://www.facebook.com/groups/114213605556/

This solution shall not include mention to the use of drugs, chemicals or biologicals (including food); invasive devices; offensive, commercial or inherently dangerous content. This solution was not medically validated. Proceed with caution! If you have any doubts, please consult with a health professional.

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Comments (3)

  • Timo Söderlund Wed, 10/22/2014 - 07:12

    This should be found under the rare disease "Aortic Dissection" rather than under "AORTIC VALVE INCOMPETENCE"

  • Patricia Pereira Wed, 10/22/2014 - 14:57

    Dear Timo, we already transferred it to Aortic Dissection’s page. Sorry for the mistake.
    Regards,
    Patient Innovation Team

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