Alpha1 Children's Day 2014
Author
Published in Alpha1 Journal 2-2014
From November 22nd to 24th, 2014, Alpha1 Germany's Children's Day took place at the Novotel in Erlangen. The number of participating children, aged 0 to 13, was record-breaking at 31. A total of 43 adults in Erlangen addressed this year's focus of Children's Day: the psychological and social impact of an AATM diagnosis on children, adolescents, and their families.
In the conference room, it quickly became clear from the presentations, discussions, and questions that young people with alpha syndrome and their parents face different challenges than affected adults. Even shortly after birth, when unusual symptoms appear in infants, parents are confronted with the question of when to test their baby. This also raises medical-ethical questions about a young child's right to privacy: Do parents have the right (or perhaps the duty) to make the decision for their children? Or are they thereby infringing on the child's "right not to know"? These are just some of the questions that continue throughout childhood and into adulthood: How do I tell my child? And, above all, when? And how? The children go to kindergarten, school, clubs, and build a circle of friends; in doing so, they grow up with the awareness that they cannot or are not allowed to do certain things, they also live with being different, and they must develop their own attitude towards it. And then there's puberty, an already turbulent phase for adolescents – an age when one feels invulnerable and when topics like illness or symptoms seem galaxies away from the everyday concerns of teenagers. At the event in Erlangen, it became clear that families and parents also have to deal with the worry that their child might experience stigmatization in their social environment because of the illness. When considering starting a family, those affected by AATM must also be aware of the hereditary component of the condition, as they could pass it on to their children. On the following pages of the journal, you will find extensive reports on how all these topics were addressed in Erlangen. Ultimately, the realization was that there are no easy answers to these questions, and no "right" or "wrong." Each family must ultimately decide for themselves how to deal with the illness and how to talk about it with their children. But affected families are not alone: Alpha1 Germany and its members support Alphas and their families with advice and practical assistance.
The idea of organizing an information day specifically for topics concerning children is proving contagious: Alpha1 Austria is planning a children's day in the Alpine republic next year.
The main participants of Children's Day, the children themselves, were thrilled with the full-day program on Saturday, which included a day trip to the Erlangen Youth Farm under the professional supervision of the Hamburg Games Gallery. The weather was perfect for the young Alphas, providing a pleasantly mild, rain-free day, so there were no limits to the fun and games outdoors. Whether crafting stars, playing foosball, or interacting with sheep, geese, or donkeys in the large petting zoo – there was something for everyone. As the saying goes, "A picture is worth a thousand words," so we'll let the photos of this eventful day speak for themselves on the following pages.
Published in Alpha1 Journal 2-2014.
Overview of the lectures
- Marion Wilkens: PiMZ – I'm just a carrier
- Dr. Rüdiger Kardorff: Liver manifestation of Alpha-1 antitrypsin deficiency
- Dipl.-Psch. Markus Nehrke: How do I tell my child?
