The SHG Weser-Ems – Contact Person

Hello to everyone interested in the topic of Alpha-1 Antitrypsin Deficiency!

My name is Lothar Renken-Nickel, and since October 2019 I have been leading the self-help group Alpha-1 in the Weser-Ems region.

I received my own diagnosis as a PiZZ patient in 2018 – a moment that literally knocked the wind out of me. It felt like my world was collapsing, and I fell into a deep depression…

…some time later I got to know the association Alpha-1 Germany e.V. I received an incredibly warm welcome and comprehensive information. Based on this positive experience, it almost spontaneously arose that I was allowed to take over the leadership of the previously leaderless group – although at first I thought: „"How am I supposed to manage that? I hardly know anything about Alpha-1!"“ But I was told: „"Your members will explain it to you."“ – and that's exactly how it was. Today, several years later, I have come to terms with my genetic defect – yes, I deliberately don't call it that. Illness – arranged.

We organize two group meetings per year where we exchange news, talk about Alpha-1 – or simply laugh, chat, and talk about anything and everything. We support each other – true self-help in the best sense. Once a year, we also attend the association's general meeting together. There, we listen to exciting medical lectures, learn about the latest developments in research and therapy – and at the same time enjoy a wonderful weekend together in great company.

Anyone who would like to get to know this wonderful, almost familial community is welcome to contact me. As long as the sun is in the sky, I am available for you.

Warm regards

Lothar 🤗