You do not have to be alone with your questions. You can find an overview of the self-help groups for sickle cell disease here:
SAM Deutschland e.V. is a patient organisation for children and adult patients with (chronically) rare diseases such as thalassaemia, diamond blackfan, sickle cell anaemia/sickle cell disease and transfusion-related iron overload, as well as their relatives.
www.kinderblutkrankheiten.de is an information portal on blood and coagulation disorders.