A rare disease has different classifications over the world. In Sweden it is called ”sällsynt diagnos” or ”rare diagnosis”. For an illness to be classified as a ”rare diagnosis” less than 100 persons out of 1.000.000 get it per year. Aortic Dissection (AD) occurs for less than 30 persons out of 1.000.000 per year. A majority of them dies either before they reach hospital or during or after surgery. So AD classifies as a super rare illness when it comes to survivors. There are not many survivors living with Aortic Dissection and that is why there are no regular patients associations for this group of patients.
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. Now they have opened up for an annual photo contest. A way to show rare diseases in an interesting way. I participate with a photo taken by the Swedish famous professional photographer Emelie Asplund – with my disease Acute Aortic Dissection
Please vote for my contribution (click here) in a European photo contest for rare diseases. . When i got ill, I had immediate acute open heart surgery, got new heart valves, a graft (tube) to replace part of my aorta, a pacemaker, and now live with a dissected aorta all the way down into my legs. A dissected aorta is like a double-barreled tube, where blood has found its way into the middle layers of the aortic wall and thereby made the aorta to swell. I hope this is one of many photos showing Aortic Dissection 2014. The photo i sent in is taken by Emelie Asplund (professional photographer in Gothenburg, Sweden), and is taken on our 25:th wedding anniversary day 27 may 2014. You can submit your own photo (click here) Let us show the world survivor pictures from many countries all over the world.
Many persons die in vain every year in the emergency rooms in hospitals all over the world in aortic dissection, since it is difficult to make the proper diagnosis. AD is often mistaken for a heart attack, and to make the proper diagnosis digital imaging is needed, as a CT-scan or MRI. Read more in the ”Ritter Rules”. The more known Aortic Dissection becomes, the larger the chances to get a proper diagnosis.
Here are links to other AD survivors photos in the contest:
Allison Seed (Philadelphia, Pennsylvania US)
Joanna Husted McIntire (Philadelphia, Pennsylvania US)
Nicola McMeekin (Alnwick, United Kingdom)
Steve Gee (Ashland, Oregon US)
Steve Harris (USA)
Stefan Manning (Partille, Sweden)
Tammy White (Adelaide, Australia)
Timo Soderlund (Sandared, Sweden)