Once a boy is diagnosed with cerebral ALD, it is crucial to undergo prompt evaluation in order to evaluate eligibility for a bone marrow transplant. It is crucial for a boy to undergo bone marrow transplantation at the earliest signs of the disease.
A “Loes Score” is a system used to distinguish how far advanced their ALD is and if they are eligible for transplant. A “Loes Score” of less than 9 and closer to 1 has shown to have the most optimal results when considering bone marrow transplantation.
For a cord blood transplant, stem cells come from umbilical cords that are donated and stored after live, healthy births of unaffected donors. To learn more about donating your baby’s umbilical cord, please visit the Carolina Cord Blood Bank.
Conner has received a bone marrow transplant and is doing well.
Learn More About Treatment & Drugs for ALD
Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 17,000 people. As it is an X-linked genetic disease, which means, it most severely affects boys and men.
ALD disease is a genetic, or inherited, disorder. If a mother is a carrier of ALD, there is a 50% chance of passing this on to her children. If a father is a carrier of ALD, he will pass this on to his daughter.
ALD is diagnosed through a blood test, which analyzes the amount of very long chain fatty acids, which are elevated in ALD. Genetic testing will confirm the diagnosis. An MRI diagnoses cerebral ALD.