Adult cerebral version

[HenryW]

Hello,

Does anyone know what percentage of adult patients with AMN eventually get the cerebral version?

[bluejadedwho]

I read before about 30%. But I’m sure that’s very hard to quantify.

[HenryW in reply to bluejadedwho]

I think it would also depend on age. I have read the older you are, the better your chance of escaping the severe AMN.

[Genevieve34]

From ALD connect: « Cerebral ALD can also occur in men. At least 20 percent of all affected men develop cognitive decline similar and cerebral ALD to that seen in boys with childhood cerebral forms. These patients develop progressive neurological symptoms similar to childhood cerebral ALD and typically result in severe neurological impairment, and eventually vegetative state or death. »

[HenryW in reply to Genevieve34]

Hello, I couldn't find the 20% figure on the ALD Connect web site.

[Genevieve34]

aldconnect.org/cerebral-ald/

[Genevieve34]

Also, as I understand you are 60, I wouldn't worry too much about cerebral ALD. The adult form seems to develop usually way before that (in your twenties or thirthies mainly, as for my grandfather and my 2 brothers)

[HenryW in reply to Genevieve34]

Thanks.