To maintain your privacy in a google-y universe, please do not use your real-life name.
To change your screen name, click here.
All of the material provided on this site is for informational purposes only and is not a substitute for professional medical advice or treatment.
Always seek the advice of your physician or qualified health provider with any questions regarding your health.
Do not disregard professional medical advice or delay seeking it because of something you read on this site.
Thanks for your cooperation.
Adrenoleukodystrophy (ALD) is a rare, genetic disorder that leads to brain damage and failure of the adrenal glands. It affects the body’s nervous system, causing the weakening and failure of the nerve impulse; thus leading to disability.
Adrenoleukodystrophy (ALD) is a disorder of peroxisomal fatty acid beta oxidation which results in the accumulation of very-long chain fatty acids in tissues throughout the body. Clinically, ALD is a heterogenous disorder, presenting with several distinct phenotypes, and no clear pattern of genotype-phenotype correlation. As an X-linked disorder, ALD presents most commonly in males, however approximately 50% of heterozygote females show some symptoms later in life. Approximately one-third of ALD patients will present with the childhood cerebral form of the disease, which is the most severe form.
My son was diagnosed in 4/2014.But i didn't do anything to him for treatment ,because i'm from Vietnam and in my country this disease seems to be strange and very rare , my doctor didn't mention to me about any treatment. now myson is almost in…Continue
My son was diagnosed 3 days ago 12/16/15. We are still deciding what to do, where to go etc? How do we find out how advanced this disease is. My son does not show many of the symptoms i've read about. He did have a major seizure the week of…Continue
Hi our two year old son has recently been diagnosed with X-ALD as a result of genetic testing and the knowledge that I am a carrier. He is currently asymptomatic and will just be monitored going forward from this point. We are hoping that with this…Continue
Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now.