Author
Linda Tietz, Alpha1 Germany eV, as published in Alpha1 Journal 2/2020.
We are pleased to announce further active support from one of our members: Madline Mack, deputy of the self-help group Region Stuttgart, supports our board in the area of event management.
Linda Tietz contacted her to get to know her better for our members:
Linda Tietz: Hello dear Madline and welcome to the organizing team of our association! Some of our members already know you from the Stuttgart region self-help group as Heike Isensee's deputy and from past members' meetings and information days. How did you come to be more involved in event management?
Madline Mack: Hello Linda! As Heike Isensee's deputy in the Stuttgart region self-help group, I also came into closer contact with the board of our association and gained some insight into their diverse activities. Since I coordinate the childcare sector professionally in local government, event management was a way for me to lighten the board's workload. And as a mother, I suppose organizing is just second nature to me.
Linda Tietz: Our readers are always very interested to learn how they came to join our organization, Alpha1 Germany. Where and how did you first hear about us?
Madline Mack: Although I was diagnosed with PiZZ as a three-week-old baby and grew up with the knowledge and the "don'ts" of being an Alpha-1 patient, I didn't consciously engage with it until much later and then discovered that it wasn't so easy to connect with other affected individuals. At the time, there wasn't an active support group in my region where I could meet other people with the condition. That's why I became a member of Alpha1 Germany e.V., met other affected individuals for the first time at the 2018 general meeting, and experienced firsthand how important contact and exchange are for those affected.
Linda Tietz: Such an early diagnosis of the disease 30 years ago is rather rare. May I ask how it came about? Was Alpha-1 already known in your family?
Madline Mack: No, I owe the early diagnosis to a wonderful pediatrician who suspected it because my newborn jaundice was very severe and couldn't be controlled with radiation. The diagnosis turned out to be alpha-1 antitrypsin deficiency with genotype ZZ. My liver recovered completely back then, and I'm happy that I haven't had any limitations in my daily life since. My father didn't get tested at the time; my mother is PiMZ, but also asymptomatic.
Linda Tietz: Was it a burden for you to grow up knowing that something was wrong with your body and that it could get worse?
Madline Mack: As a child and teenager, I didn't really think about it much. It wasn't until a good friend of mine died very unexpectedly from a completely different genetic defect that I started to come to terms with my own "burden".
Linda Tietz: Club work, job, and family – many wonderful, interesting, but also time-consuming tasks. What do you do when you have a little time left for yourself?
Madline Mack: When I have time for myself, I like to be in the mountains and nature, enjoying the fresh air. I can also just read a good book for hours.
Linda Tietz: Thank you, Madline, for your open words. Hopefully, events will soon be possible that bring us together not just digitally, but allow us to meet in person!
