Krabbe Disease Information and Resources

Looking for Answers
Looking for Answers. Sarah K. Lee

Krabbe disease (KD) is a rare disorder in which the myelin coating on the nerves breaks down, causing brain cells to be destroyed. The inherited disorder is caused by a lack of the enzyme galactocerebrosidase, which is needed for myelin metabolism. Mental and motor development are affected, and muscle weakness, deafness, and blindness can also occur. There is currently no cure for the disease, which is most commonly found in infants.

While children with Krabbe often don't survive to age 2, infusions of umbilical cord blood stem cells before onset or bone marrow transplant early in the disease can prolong life.

  • Also Known As: Krabbe Leukodystrophy, globoid cell leukodystrophy, Krabbe Syndrome
  • Alternate Spellings: Krabbe's, Krabbé
  • Common Misspellings: Crabby's

For good basic medical information about Krabbe disease, visit these pages:

Krabbe
Source: Baby's First Test

Krabbe disease
Source: Genetics Home Reference

Krabbe Disease: Inborn Error of Energy Metabolism
Source: Children's Hospital of Pittsburgh

Krabbe Disease (Globoid Cell LeukodystrophySource: Cleveland Clinic

Krabbe Disease

Source: OMIM (Online Mendelian Inheritance in Man)

For information on Krabbe disease research, visit these sites:

ClinicalTrials.gov

Judson’s Legacy

Hunter's Hope

The Legacy of Angels Foundation

National Organization for Rare Disorders

These sites offer support to families of children with Krabbe disease::

Hunter’s Hope

Krabbe's Kids

Judson's Legacy

Partners for Krabbe Research

Caring 4 Krabbe Kids

The Peace, Love & Trevor Foundation

The Jackson Project

Get information for families of newly diagnosed children on these pages:

"Hope for Life" Family Resource Guide
Source: Hunter's Hope

Do You Have a Child Newly Diagnosed With Krabbe Disease?


Source: Judson's Legacy

The Diagnosis - Now What?
Source: Caring 4 Krabbe Kids

These books may be helpful to parents of children with Krabbe disease:

Without a Word: How a Boy's Unspoken Love Changed Everything by Jill Kelly

Eyes That See: Judson's Story of Hope in Suffering by Christina Adelseck Levasheff

Krabbe's Disease: A Medical Dictionary, Bibliography, And Annotated Research Guide To Internet References by Icon Health Publications

Rosenberg's Molecular and Genetic Basis of Neurological and Psychiatric Disease: Fifth Edition edited by Robert N. Rosenberg and Juan M. Pascual

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