The idea for an issue on MSUD Around the World came in part from the many emails the group receives from outside of the United States and the recognition that many readers of our newsletter are indeed from all over this earth. Our world has gotten smaller. Communication is easier and more and more people travel throughout the globe. Our hope is that this issue of the newsletter will help those in countries with less experience identifying and treating MSUD, and also provide information for families considering international travel.
Preparing this newsletter has truly been an eye-opening experience for me as I came face-to-face with the enormous disparities, not only between nations but between regions, in the identification and treatment of MSUD. While some of us live in places where the disease is rapidly identified in those critical first days through newborn screening, others go through the agony of not knowing what is ailing their child until significant impairment has occurred. While some of us receive regular shipments of the formulas that keep our children alive and healthy, others have limited access at best. It is relatively few of us who are secure in the knowledge that when our children get sick their blood amino acid levels will be monitored and treatment will proceed accordingly. For too many of us, treatment occurs blindly without this knowledge.
Download this issue (pdf, 17.8mb)