Acute Aortic Dissection, akut aortadissektion, aorta, aorta dissektion, aortadisseksjon, aortadissektion, aortic, aortic dissection, aorticdissection, association, dissected aorta, fund, help, patient, start, Sweden
Will you help to start an Association for survivors with Aortic Dissection either by donating a small fund, or by doing something “pro bono” to help such an association getting started?
If you already have decided to help, skip A, B, and C and go directly to D :)
A. Aortic Dissection – a silent highly lethal killer.
If the inner wall in the aorta tears and ruptures, the blood can stream out in the middle layer in the aorta, creating a false passageway (false lumen) like a double barrel for the blood, causing the aorta to swell and reducing the flow of blood into the other arteries. The enlargement of the aorta may lead to a rupture totally and then the person will die very fast.
Each year three persons out of a population of 100.000 gets ill in Aortic Dissection. From the ones who get the rare condition type A, less than 1 out of 10 survives. More than half dies before reaching hospital. Having survived initial surgery, the number of survivors is reduced further due to infections, new dissections or need of further surgery.
Having survived an acute Type A operation, the survival rate is 75% the first 4-5 years. After that it is reduced to less than 50% in a few years. We talk about a few survivors on a million inhabitants per year.
Sixty years ago we all died. The first surgery on the planet was done 1954 in Texas USA by cardiac surgeons Michael E. DeBakey, Denton Cooley and Oscar Creech.
B. I survived – and now want to make a difference
Having survived thanks to a lot of good decision by different persons acting in the correct way when I got ill, a fantastic surgical crew at the Sahlgrenska University Hospital in Gothenburg in Sweden, medicines, pacemaker and caregiving from our local hospital, I am still alive and have spent the last year thinking of how I can repay the gift of getting additional time in this life.
I have found others with the same illness as myself, mostly thanks to social networks like facebook and LinkedIn. But it is not easy to get information of how to find others, since we are so few, and there are no “regular” patient association for patients with Aortic Dissection, not in Sweden and probably not anywhere in the whole world.
We all share a rare or even “super rare” diagnose. Many of us also now have a condition where our life is quite different from before. We have remaining dissections in our aortas, pacemakers, new heart valves, suffer from slight or severe damage from open heart surgery and having been connected to heart-lung-machines (brain damage, memory problems, paralyzed etc) With this said, we do not function the way we did before we got ill. Writing this letter for instance, I have had to ask for help to get it done, since I have problems with spelling, finding words and with concentration.
C. Creating an independent Association for Aortic Dissection Survivors
Having thought about how to repay the gift of extended life given to me, Firstly I have come to the conclusion that I would like to participate in creating a lasting serious association independent of single persons (we do not have the same life expectancy as persons who are not ill in AD).
An association that could work to increase knowledge about our illness, reducing the number of persons who dies in vain in emergency rooms in hospitals due to that the staff have not even had though the though Aortic Dissection before it is too late. Personally, I was lucky. After 6 hours in the ER a new doctor went on his shift and thought the thought and sent me for immediate CT-scan. If not for him – I would not be here today.
Second – a place for survivors of AD to turn to, where they can find and meet fellow survivors and solid information about our illness and all that it brings with it. Since we are so few perhaps it should be an international or global association. I have not figured that out yet.
I think the survivors in the US do a lot of super good things in respect of providing information to doctors and medical staff from foundations like The John Ritter Foundation, and The Thoracic Aortic Disease (TAD) Coalition.
Only problem is that we need that also in Sweden, in the rest of Europe, Australia, Asia, South America and New Zeeland.
D. How you can make a difference
If you would like to participate, either with a small fund, or your skills or other resources, please write me a line and let me know. Nobody can do this alone. We need to be several survivors who do it together, and also with some help from other friends to set things up to last in a professional way.
If we find the strength to start the association we will come back to you. Perhaps it starts in Sweden, or in Scandinavia, perhaps on European level or goes global directly. I do not know yet. It depends on what kind of support and help we can rally to get it started.
If you do decide to make a difference, I thank you from the bottom of my heart; you will help to prevent people dying in vain
your friend Timo Söderlund
timo.soderlund at gmail.com