Geschrieben von Ulm II
Meeting of the Waldenstroem support group in Ulm Feb. 9. – 11. 2023
Is it appropriate to talk already about tradition, once a second meeting of the Waldenstroem Group takes place in the same city Ulm (situated in the southern part of Germany) and the agenda looks like a copy/paste approach from the previous meeting in May 2022?
Sure some of the participants at the meeting in May 2022 were seen again. However since the Waldenstroem Group doubled the number of members within six months, new faces attended the reunion in February this year. Taking this into consideration, one is hesitating to talk about tradition.
Nevertheless starting with the first come together in a restaurant, the first time seen, it was again like seeing real good old friends. It seems having similar health problems, exchanging frankly very personal messages brings people faster and closer together, creating an atmosphere of common understanding of each other and mutual respect.
This kind of experience provokes the question, why in the big policy this kind of approach seems to be so rarely possible, despite the fact huge challenges are threatening the survival of mankind in an unseen way.
Let’s leave this philosophical side trip and come back to Ulm, this old medieval city at the river Danube, where a charming, humorous Daniela took us on a tour through her town. Here we recognized another copy/paste approach or call it tradition. But to our surprise Daniela had sufficient new historical details for those, who already enjoyed her talents during our May 2022 meeting.
The afternoon saw us finally at the University of Ulm in a meeting following the tradition with Prof. Dr. Christian Buske and newly his assistant Mrs. Lisa Maria Kaiser. It was a question and answer session also set up as video conference for those, who could not come to Ulm. The title of a list of topics and questions previously collected over the months in our WhatsApp group was “Symptoms of Waldenstroem Makroglobulinemia” or what are the B-cells causing in our bodies. And Prof. Buske took us through the whole story of Waldenstroem disease very detailed, full of patience. Most complex medical knowledge were explained to us in an astonishing clear and well understandable way. We really learned a lot and were thankful students of this extraordinary teacher. He showed us ways how the treatment of our disease in the future could look like. We left the meeting with a remarkably increased knowledge, curiosity and hope for the future. It wouldn’t have made too much of a sense to continue the video conferencing while enjoying later the dinner in a restaurant together with Prof. Buske and Mrs. Kaiser, however the fruitful discussion about our questions didn’t stopped.
Therefor only the official part of the 2. Ulm Meeting is available as a podcast on the Waldenstroem website following the tradition from the first meeting in May 2022.
Since tradition is not a bad thing at all, we shall see each other another time in Ulm to gather information and perspectives of our disease. Furthermore the personal exchange and contact is what carries us through life.
by Jürgen (Waldenström patient)
Ulm I
Meeting in Ulm, Germany, May 19th – 21th, 2022
It was one of those days in our Waldenstroem support group founded a year ago by Uwe Josef, where one bad news followed the next. It was a Friday and one within our group, let’s call him George, thought it wouldn’t be good to start the weekend in such a desperate mood.
George brought up a completely different item, by proposing we should think about a personal meeting for celebrating the first anniversary of our group’s existence. The reaction was overwhelming positive, maps of Germany were immediately exchanged with markers, where the different group members had their living in the purpose to identify the best place for the reunion. George continued to think and made already a draft of the meeting schedule coming to the conclusion an additional high light is required. He contacted Professor Christian Buske, the specialist of Waldenstroem’s Macroglobulinemia (MW) at the University of Ulm, a city in South Germany at the river Danube. With the promise of C. Buske to give the group a special presentation about the disease including a discussion George informed the group on Monday the meeting would take place in Ulm at the University for a private lesson about MW.
And it turned out to be a very special event. Prof. Buske took us through the basics of our disease, explained in clear words complex medical and biological interrelationships, talked about the gene defects causing WM and described, what’s going on in our bodies. We learned about the different potential treatments and how this is linked to the specific type of gene defect, which requires to be analyzed before. We felt afterwards well informed about the latest status of WM research. The complete session is available as a video stream in our website (www.waldenstroem.de).
The meeting in Ulm was not only reporting of scientific research and the background of our disease, it was also a social event. Once you exchange over a year openly thoughts and unrestricted information, you are curious to meet the persons you talked to. From the very beginning it was almost a kind of family reunion. No hurdle existed. Nevertheless it’s not automatically like this once people from Austria, Germany and Switzerland are coming together the first time.
A guided tour through the city of Ulm, full of humor presented by a charming lady, rounded up the program of this very first Waldenstroem meeting of ours.
The final decision was obvious, we keep in touch and with the promise of Prof. Buske to continue to support us, we came to the unanimous decision , it was an efficient and valuable meeting, despite the fact we left with a lot of additional questions concerning WM.
by Jürgen (Waldenström patient)