Author
Marion Wilkens, as appeared in Alpha1 Journal 2/2023.
The city of Essen has two Alpha-1 Centers that cooperate wonderfully. Dr. Albrecht, Medical Director of the MVZ Ruhrlandklinik (Outpatient Lung Center), and Dr. Welsner, Senior Physician at the Department of Pneumology, Ruhrlandklinik, have jointly revived—or should I say, reinvented—the Alpha-1 Patient Day.
Essen is an important center for Alpha-1 patients, renowned for its expertise and experience, and also significant as a transplant center. To emphasize the importance of Alpha-1 disease, the patient day has been renamed the West German Alpha-1 Patient Day. This year it took place on November 4th from 10:00 AM to 3:00 PM at the Outpatient Lung Center. This is a great advantage for us, as the center is located directly opposite the train station, eliminating the need for long walks.
Dr. Albrecht and Dr. Welsner have brought in additional cooperation partners, firstly the team of Prof. Strnad from Aachen, who again traveled with a large team to carry out the liver study, and secondly us, the patient organization Alpha1 Deutschland eV, to incorporate the patient perspective into the design.
Thanks also to the pharmaceutical companies CSL Behring and Grifols, who made this meeting possible and once again provided us as exhibitors with good cheer and lots of information.
The program, moderated by Dr. Albrecht without rigid guidelines, allowed ample time for personal comments and questions. The topics included:
- What's new in alpha-1 antitrypsin deficiency? An overview of the latest studies (Dr. Matthias Welsner)
- EARCO (European Alpha-1 Antitrypsin Deficiency Registry), Essen is one of the participating centers for collecting patient data (Dr. Sven Albrecht)
- Physiotherapy and rehabilitation (Andrea Huhn, from the in-house physiotherapy center Twenty Nine Five Practice)
- Alpha-1 and the liver (Dr. Malin Fromme)
There was time for liver examinations, one or two lung function tests, a tour and trying out of the physiotherapy equipment, and of course for exchanging ideas over coffee and lunch.
And this day also had a very special moment: Because one person who absolutely cannot be missing when the word Ruhrland Clinic is mentioned is our long-standing colleague Dr. Steveling!
Even though it wasn't planned, we couldn't just quietly retire him at the end of the year. How many of you are "his" patients? How many did he help, advocating for each and every one of them when others had long since given up?.
He helped found our patient organization 22 years ago, and for all these years his heart has been set on faster diagnosis, individualized treatment, and the dissemination of all knowledge about the deficiency.
The question then became, how can we honor this? What is there that he hasn't yet achieved? Exactly: a lifetime, free honorary membership in the club!
He can celebrate this milestone with a nice glass of red wine and happily think of us during his first days and evenings off. But retirement without us is almost unimaginable, so we were able to persuade him to give the opening presentation at our next information day in 2024, focusing specifically on MZ. This provided a very special ending to the thoroughly successful day.
