the international society for mannosidosis & related diseases presents:
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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. |
| 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! |
![]() ISMRD's BMT Stars Shine! |
| Transplant Specialists | |
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For information on BMT for your child or someone in your care, ISMRD can connect you with two of the recognized authorities on these procedures for Lysosomal Diseases: Dr. William Krivit and Dr. Charles Peters. Such contact can be arranged via email or phone, using one of the options below. Your email will be answered by either Dr. Krivit or Dr. Peters. |
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| BMT Links & Informational Resources | |
go to other areas of our website: