Help my Son

[Chester_Tolentino]

I want to know what kind of therapy it will help to my son to cure this adrenoleukodystrophy or what medication i need to do. I watched the movie of "Lorenzo's Oil" i have see the cure! The oil but i dont know how and where to find the oil

[Bunnyjen101]

myelin.org/lorenzos-oil/

This site may help you research. How old is your son and when was he diagnosed?

[Rosita5]

Hi, I’m terribly sorry about this! Your son would need bone marrow transplant or gene therapy (gene therapy is not currently on the market but I believe there is a clinical trial currently going on.) Lorenzo oil is not something that is being used to treat ALD boys at the moment.

[Chester_Tolentino in reply to Rosita5]

Where i can find the gene therapy im in the philippines i dont have an idea😭

[Bunnyjen101 in reply to Chester_Tolentino]

clinicalresearchforum.org/p...

[Bunnyjen101 in reply to Bunnyjen101]

Bluebird does a lot of research. Lenti-d is what they are reasearching Lately

adrenoleukodystrophynews.co...

[Bunnyjen101 in reply to Bunnyjen101]

apamedcentral.org/Synapse/D...

[Bunnyjen101 in reply to Bunnyjen101]

The last link has a phone number and address of a guy in the Philippines who is researching the disease. Contacting him may give you more info for your area

[ElisaS Moderator]

Unfortunately, Lorenzo’s oil is not recommended for treatment. Does your son have symptoms?

[Bunnyjen101]

Here’s an article about therapy so you can read up onIt

sciencemag.org/news/2016/05...