Although most people with alpha-1 antitrypsin deficiency primarily suffer from lung damage, the liver can also be affected. This is especially true in younger children: It is estimated that one in ten children who carry both copies of the Z variant of the alpha-1 antitrypsin protein exhibits liver symptoms. The good news is that liver symptoms are often limited to temporary jaundice in infancy and elevated liver enzymes and/or an enlarged liver in childhood. Only in very In rare cases, the liver is so severely damaged that a transplant is required in the first years of life.
Despite all the existing worries, uncertainties and insecurity, it is particularly important that you have competent medical support at your side and that you as a family feel well cared for and taken seriously.
You can find specialized contacts in the Alpha1 Children's Centers, in pediatric Gastroenterologists and pulmonologists.
In this video Prof. Rainer Ganschow from the Alpha1 Children's Center Bonn and the mother of an affected child explain the Alpha-1 antitrypsin deficiency in childhood and adolescence and the opportunities for early detection for the whole family.
„What makes our Alpha1 family strong“ This is a presentation given by psychologist Andrea Meiners in 2016 on the occasion of our information day.
But support is especially important in everyday life, reducing uncertainty and conserving your own resources. Gabi Niethammer, herself the mother of an affected child, will be happy to advise you on this at 040 78891320 and gabi.niethammer@alpha1-deutschland.org.
You can find initial important information and context in our flyer. Alpha-1 antitrypsin deficiency in children.
