The Aplastic Anemia & MDS International Foundation, Inc has several great resources for families that have children with bone marrow diseases, such as Shwachman-Diamond Syndrome. Below is a summary of one booklet we found helpful for our own families. To order a free copy of this book, please visit the AA& MDS Foundation website.
Families Coping with Bone Marrow Failure Diseases: Aplastic Anemia, Myelodysplastic Syndromes and PNH -- This booklet goes into Reactions to illness, how to deal with reactions from others, changes to expect within the family, learning to cope…… also has sections on coping with hospital life and a section on helping children cope.
