ISMRD
Bone Marrow Transplants are currently the only therapy available for the Oligosaccharide Diseases. It will not be a viable choice for everyone, as many factors must be considered: age, degree of CNS (Central Nervous System) involvement, sibling donor possibilities and others. Even then the choice to proceed can be a difficult one. Alpha Mannosidosis and Fucosidosis patients have seen promising results with the few transplants performed thus far. For other Oligosaccharide Disorders the track record is sparse and not yet proven viable. Nonetheless, it is an option that may be worth exploring. To learn more, families and caregivers may wish to consult one of our qualified storage disease transplant specialists (see below). You may also want to see our BMT Links & Resources page.
As a public service the International Society for Mannosidosis & Related Diseases presents two online journals documenting the experiences of an adult and an adolescent child who underwent a BMT for Alpha Mannosidosis:
These ongoing accounts take the reader from journey's start prior to the operation, on to and through recovery. We hope these heart-rending accounts will be helpful in understanding the nature of these procedures and the course they entail. These stories are told through the words of each patient's parents and feature photos provided by them. ISMRD provides these informationally, without editorial comment. We are grateful to each family for sharing their stories!
Transplant Specialists
For information on BMT for your child or someone in your care, ISMRD can help connect you with doctors and families who have expertise in this field. Such contact can be arranged via email.