11th Essen patient seminar successful
On September 28, 2019, the Essen University Hospital held its 11th patient and family seminar on PNH and AA. Under the direction of Prof Dr Ulrich Dührsen and PD Dr Alexander Röth as usual a varied and exciting program was offered that left enough space for breaks and exchanges between the more than 200 participants.
After the welcome by Prof Dr Dührsen the moderator and trainer Mr Markus Neumann started with a quiz for entertainment. The participants were able to answer medical questions with their smartphones and thus playfully learned new things. Subsequently, PD Dr Röth brought the attendees up to date with PNH and AA: What do the diseases mean and what therapy options are there with what chances of success?
After the following coffee break, including taking the group picture, Ulrike Göbel presented our association and Pascale Burmester presented the lichterzellen foundation before the presentation of the lichterzellen research award to PD Dr. Fabian Beier (UK Aachen) and Dr. Ferras Alashkar (UK Essen) took place.
The participants used the subsequent lunch break to fortify themselves with the obligatory and, as always, excellent lasagna and salad as well as snacks with coffee and tea for the afternoon, which consisted of two workshop rounds.
In the workshop “New Therapies for PNH”, PD Dr Röth first presented the ongoing trials in detail and then asked patients about their experiences with them. Those affected reported positively about the handling and effectiveness of their medication and in some cases felt significantly better. To what extent this can be transferred to a larger group of PNH patients and what longer-term possible risks are associated with this remains to be seen.
The workshop “Fatigue – Now What?” was led by Ms. Jo Hanna Oliva and dealt with the question of what fatigue exactly is and how to differentiate it from depression. Ms. Oliva encouraged the participants to take part and thus enabled an interactive exchange between them. She gave many helpful tips, for example to allow the body more relaxation, to do endurance sports or to learn to say no. Her message was particularly important to plan recovery times for yourself every day so that the body can recharge and regenerate itself.
In his “Update Transplantation” workshop, Dr Dr Lambros Kordelas tried to explain the complex topic as simply and clearly as possible, which made it easier for the audience to understand. The fact that he incorporated experience reports from transplanted patients made it clear to the participants what a transplant means. Since it was a somewhat smaller group of participants, he invited them to ask questions in the middle of the workshop and then took the time to answer each individual’s questions. Further contents of the workshops dealt with the topics of telomeropathy, social law in the case of chronic diseases, initial diagnosis of aplastic anemia, decision-making aids when there is too much information as well as the exchange round for relatives offered by our association to give this important group the opportunity to ask each other questions and share experiences to report.
At the end of the patient seminar, PD Dr Röth answered all questions that had arisen in advance of or during the patient seminar, and then released the participants into the final coffee.
We thank PD Dr Röth and the entire organisation team for another extremely successful, informative and varied patient seminar and are already looking forward to the 2020 seminar!