Currently, the only form of treatment for a person diagnosed with MLD is a bone marrow or stem cell transplant, and these are typically only performed on people who do not display any significant symptoms of MLD.
Various hospitals in the country currently perform bone marrow and stem cell transplants. Duke University is a leader in performing stem cell transplants in children with MLD, while University of Minnesota has performed many bone marrow transplants for MLD patients. Click here for a slide show of Jack Evanosky's stem cell transplant journey.
The advantage that stem cell transplants have over bone marrow transplants is that stem cells do not have to match as closely as bone marrow, and therefore is much easier to obtain. In addition, doctors have found that patients who receive stem cell transplants seem to show more improvement than patients who receive bone marrow transplants. However, these are anecdotal observations that have not been quantified numerically.
Click here to read about the latest efforts in MLD research.
If you know of a child or loved one who was recently diagnosed with MLD and are looking for information regarding umbilical cord stem cell transplants, please contact Dr. Joanne Kurtzberg at Duke University by e-mail at firstname.lastname@example.org. You may also view the Pediatric Blood and Marrow Transplantation site.
For developmental evaluations and questions regarding the progression of MLD symptoms, Dr. Maria Escolar at the University of North Carolina Center for Development and Learning is a recognized expert in this field.
You may also contact Bob Evanosky at The Evanosky Foundation at (630) 236-8039 or by e-mail at email@example.com.
Graft vs. host disease (GVHD) can occur after a stem cell transplant and is a result of the "new" or graft cells attacking the body's existing cells. Symptoms of GVHD include itching, rash, vomiting and diarrhea. If left untreated, GVHD will eventually attack the body's organs and can cause death.
Dr. David A. Jacobsohn at Children's Memorial Hospital in Chicago is an attending physician, Hematology, Oncology and Stem Cell Transplant and Director of the Chronic Graft vs. Host Disease Program. He is also an assistant professor of Pediatrics, Northwestern University's Feinberg School of Medicine. His specialties include Transplantation — stem cell and Cancer and blood diseases, with special interests in stem cell transplantation as well as acute and chronic graft vs. host disease.
Dr. Jacobsohn has been the author of several studies on GVHD and is considered a leading expert. Here are abstracts of several of the studies he has authored:
If you would like to discuss treatment of GVHD with Dr. Jacobsohn, you may reach him by phone at 773-880-3694 or by e-mail at firstname.lastname@example.org.