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.
Teachers & School Nurses Guide to Bone Marrow Failure Disease – This booklet is an excellent resource for school staff. It discusses bone marrow failure, what symptoms to look for in a child that has bone marrow disease and includes a section on supporting a child’s emotional needs along with the classmates. Divided in sections for nurses and teachers, this is an excellent resource for any school that has a child with bone marrow failure attending.