Wellcome to our
online support group for aortic dissection
An aortic dissection changes your life from one moment to the next. We know
how it feels because we've experienced it ourselves. In our online support group, those
affected and their families find a safe space for exchange, support, and understanding.
Together, we share experiences, give each other strength, and help each other
to cope with their new everyday lives.
About us
The online group has been around for four years, and so far, approximately 25 patients from across Germany have partici-pated. Our discussion topics are as diverse as the disease itself.
Many talk about their emergency and their experiences in
the hospital, about doctors and medications. The question often arises about what can and should be done in everyday life. A major topic is aftercare – and which general practitioners you can contact.
Other important topics include rehabilitation measures, support for nursing care needs, the degree of severe disability, and questions about incapacity for work or pensions. All of this shows how much you and your family can face after an aortic dissection – and how valuable it is
to exchange ideas with other affected individuals.
What unites us all is the feeling of having been given a completely new, second life. For most of us, not only our health situation has changed, but also our professional
and personal lives.
Through the exchange in the group, we can better under-stand and accept this new reality. It is encouraging to see how those affected regain hope over time and fight their
way back to life, bit by bit. Such progress gives us the strength to continue on the path together.
But not everyone is so lucky. Unfortunately, we have already lost participants, as the longterm survival rate after an aortic dissection is still associated with risks. This makes it all the more important not to have to walk this path alone.
Our Meetings
Our online meetings take place four times a year –
in March, June, September, and December, every
Thursday at 4 p.m. via Zoom. We will be happy to
share the exact dates upon request.
We are a group of patients from all over Germany,
of all ages and with very different life stories, who
are nevertheless connected by a shared experience.
For many of us, the virtual exchange is a great relief,
especially for those who would not be able to attend
an in-person meeting due to health restrictions or
long travel.
Meetings via Zoom may not be a given for everyone
right from the start, but after just two meetings, many
feel more comfortable and experience how close
they can become online.
Newcomers are always welcome to join us – we look
forward to welcoming every new person to our group.
Get in touch
You're a survivor
Have you also had an aortic dissection and would like to participate in our online meetings?
Then simply contact us using the contact form; we look forward to meeting you.
You're a family member
As a family member, you are welcome to use the contact form if you are interested in exchanging
ideas with other family members.
You received a diagnosis
If you have received a similar diagnosis and are looking to exchange ideas with other affected people, you are also welcome to get in touch.
No advice
Please understand that we cannot offer medical advice on diagnoses such as aneurysms or
similar conditions. Further information can be found under "Helpful Links."
Conditions of participation
Since the meetings are held virtually, participation is only possible with your camera and microphone switched on. We attach great importance to respectful and active participation. Furthermore, all participants are bound to confidentiality – personal information and shared experiences should not be shared with anyone else.
Dates
We're finally getting our
own website
If it takes a little longer ;) For the past five years, we've been covered on the website of the Aortis, who founded this online group during the Covid19 pandemic. Now we've gathered the courage and the energy to get started: with our own website to gain visibility. That's the new life – some things just take time.
First interactive patient workshop
on aortic diseases
On March 21, 2025, Oldenburg Hospital hosted its first interactive patient work-shop on aortic disease. The goal of the event was to learn more about the medical care and quality of life of patients with aortic disease.
Short presentations presented important aspects of aortic disease treatment. These were followed by
TED questions, which were collected digitally and anonymously. The results were presented live and discussed with
the participants.
Introduction to the Aortic Hotline
and the DoctorBox-App
At a meeting, we were introduced to the Aortic Hotline – a hotline for emergency responders and physicians that provides a direct connection to the experts at the German Heart Center Berlin (DHZB) in emergencies.
The DoctorBox-App is particularly helpful for patients with an existing diagnosis. In emergencies or with new treatments, information can be provided immediately, reducing misunderstandings and delays and significantly simplifying care.
Helpful Links
1. aorticdissectionawareness.org
The website is run by patients from Great Britain and Ireland who have experienced aortic dissection. The Aortic Dissection Awareness Organization is also supported by healthcare professionals and serves as a research organization.
https://aorticdissectionawareness.org/https://aorticdissectionawareness.org/resources/aortic-dissection-the-patient-guide
2. aorticassociation.org
An overview of specialized centers in Europe can be found on the Aortic Association website,
which lists clinics specializing in the treatment of aortic dissections.
3. aortendissektion.de
A very comprehensive website by patients for patients with practical experience
of life after an aortic dissection.
4. herzstiftung.de
The German Heart Foundation offers a wealth of information, publications, events,
and professional groups on all aspects of the heart.
https://herzstiftung.de/service-und-aktuelles/podcasts/aortendissektion
5. thinkaorta.net
Think Aorta is a global campaign focused on the problem of misdiagnosis and delay in acute aortic dissection. It was initiated and is led by the national patient advocacy organization Aortic Dissection Awareness UK & Ireland.
Experiences
After my emergency surgery nine years ago, I tried to find other people to talk to who made similar experiences. It wasn't easy, because there were no local support groups in my area and the next group meeting was hundred of miles away. Then I received an invitation to join the online group—and I was so grateful for the opportunity to connect with other survivors. The online meetings are a great way for me to just go online and partici-pate. I've already been able to discuss many experiences and situations in the group, which has helped me a lot.
Tatjana
I also had to undergo an emergency surgery in April 2022.
The life I had previously led changed completely. I heard everywhere: "You were so lucky you have survived." I asked myself where the other survivors were and how they and
their families were doing. After some research online, I came
across this group. The online meeting is always a pleasant
and informative exchange among like-minded people.
It's good to know that there are other survivors who are
in a similar situation and who have had some of the same experiences. There are always enough aspects to explore
and discuss. You are simply NOT ALONE.
Martina
My life was turned upside down after my emergency surgery
at the German Heart Center at the Charité in Berlin. It was a difficult time returning to life for my family and me. I felt helpless and alone with this rare disease, and I missed connecting with other patients. I came across the Aortis on the internet and was referred to this online group. This allows me to exchange ideas with others. There are so many topics related to this disease that we discuss in the group, and we share experiences. I'm glad
I found this group and always look forward to our online meetings.
Christiane
The time spent in the meetings in our virtual space practically flew by, and was so entertaining not only because of the moderation skills, which allowed every participant to speak,
but also because of the groups enthusiasm and desire to share. After noticing that I was not only welcomed into the existing group with interest, openness, and a friendly attitude, but also because the discussions were very objective and disciplined throughout, I immediately decided, based on the many
important shared experiences, to continue participating
in the online meetings if possible.