My 32 year old son just passed on June 27th . He was diagnosed at 25 with ALD. Everyone told me it was AMN because of his age but the dr said diagnosis was ALD. What is the difference? I know some men with AMN dont get the brain involvement but then i guess some do. This is such a terrible disease im just interested to know if there is a difference.
Difference between AMN and ALD - Leukodystrophy Su...
Leukodystrophy Support
195 posts •
Difference between AMN and ALD
Written by
noahsgramma58
To view profiles and participate in discussions please or .
The ability to reply to this post has been turned off.
10 Replies
•
My deepest sympathy on the loss of your son. The diagnosis of ALD for your son was correct. There is only one disease, ALD, but there are different phenotypes - cerebral ALD, AMN, Addison's only and Asymptomatic. Those that have brain involvement are referred to as having cerebral ALD and those with spinal cord involvement are referred to as having AMN. Hope this helps.
ALD= Form children
AMN=Form adult
Hi, firstly so sorry to hear about your son. ALD and AMN are caused by the same defective gene, so diagnosis is often referred to as ALD. AMN is the adult form and generally speaking mainly affects the spinal cord, so causes walking difficulties, stiffness of legs, bladder and bowel disturbances, but you are quite correct in saying that some adult men do also have brain involvement in which case the diagnosis can be AMN along with cerebral ALD, which is similar to the childhood form but does tend to be slower in progression. Most men also have Addison's disease (adrenal insufficiency) which needs to be treated with steroids and must be monitored closely by an endocrinologist. I hope this brief description helps, please do feel free to ask anything more. I am actually the Project Manager for the charity ALDLife, our website is aldlife.org I am also the mum of boys with ALD. Kind regards Karen
Please also take into account that adult men with AMN are at risk of developing cerebral ALD as are young boys with ALD - around 30% unfortunately go on to develop this. You can find more information about ALD and AMN here: aldlife.org/patient-informa....
Thanks,
Lellety unfortunately its not that simple to say AMN-Adults and ALD-Children my sons diagnosis at 25 was ALD. Its all so sad no matter what it is called.
And thank you all for your replies. Its nice to talk to people who understand what you are talking about.
The ability to reply to this post has been turned off.