We did it – living with Aortic Dissection

Tags

Acute Aortic Dissection, akut aortadissektion, aorta, aorta dissektion, aorta dissektion föreningen skandinavien, aortadissektion, aortic dissection, aorticdissection, denmark, dissected aorta, norway, patient, patinet, Sweden

We did it. We have founded an international patients (survivors)  non-profit association for a super rare diagnosis, and even more rare when it comes to survivors of the illness that is so lethal. “Aorta Dissektion Föreningen Skandinavien”

Seventeen survivors, all in different cities in Scandinavia.
Four (4) survivors in Denmark from Tønder, Fredrikshavn, Stenløse and Aalborg.
One (1) survivor in Norway: Flisa.
Twelwe (12) survivors in Sweden from Mariefred, Sollentuna, Gävle, Göteborg, Eslöv, Örebro, Alingsås, Stenungsund, Partille, Staffanstorp, Hällingsjö and Sandared.
Together we have founded the first non-profit international patients association for survivors of Aortic Dissection in the World.

We have statutes that has been discussed and revised nine times before we all agreed. We have a formal board with a chairman, secretary and treasurer. We have an auditor, and two alternate board members. All in all five (5) survivors has taken on formal duties to be able to set up the association.

Most of us have never met in real life, we have found each other with help of internet, we have had meetings in closed forums on facebook, live meetings over Skype, and we have had an open democratic debate to agree upon the statutes to give guidance as for what the association is about, how it is run, and how it will survive most of us who are the founders. We finally agreed on a meeting that lasted most of the day friday the 19:th of September 2014. We have during the day voted for the board, and elected a chariman, a secretary, a treasurer, a auditor to revise the annual accounts, and two alternated board members. It is a Scandinavian organisation, who will use the Scandinavian languages in public communication, Danish, Nowegian and Swedish. Main aim is to get known to all the survivors in Scandinavia, so that survivors who never met another survivor can find others, and to provide support among ourselves within the group.

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. There are no official statistics in Scandinavia when it comes to who many survivors there are in our countries.

We will now proceed with all the administration to formally set up the organisation, registering it with the approriate authorities, joining larger organisations like the “Rare disease” association founded by the Swedish National Board of Health and Welfare. We will also get the word out to media, and to all the university hopitals performing surgery and who has ICU handeling AD patients in the Scandinavian countries.

1954 the first surgery on AD was done. 2014 the first official patient organisation was founded. Horray !

Advertisements

Do you want to make a difference?

Tags

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 promote the start of an Association for survivors with Aortic Dissection either by donating a small fund, or by doing something “pro bono” ?

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 thirty (30) persons out of a population of one million (1.000.000) 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. We survived – and now we 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 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.

And now, from the 19:th September 2014, we have an international official non-profit patients association in Scandinavia founded on a joint initiativ of survivors from Denmark, Norway and Sweden.

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 let me know. Nobody can do this alone. We need help from other friends to set things up to last in a professional way.

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