Post BMT

[nevergiveuphope]

Hi I was wondering if there were any statistics available on developing ANN later in life if a BMT was done as a child for ALD. Thank you

[AussieBob]

Yes there is a recent paper published on a follow up of boys who have had a HSCT. I could email it to you if you liked

[deirdrecorr in reply to AussieBob]

Hi . Would you mind also emailing it to me? I have2 transplanted sons. My email address is [e-mail] Thanks. Deirdre

[AussieBob in reply to deirdrecorr]

Yes I will do so in the next few hours

[AussieBob in reply to deirdrecorr]

When and where were your sons transplanted?

[deirdrecorr in reply to AussieBob]

Bristol UK, both in 2001

[AussieBob in reply to deirdrecorr]

Thanks stay in touch if you wish

[deirdrecorr in reply to AussieBob]

Thanks. Have you a transplanted son or nephew?

[AussieBob in reply to deirdrecorr]

No he died before he could have one

[deirdrecorr in reply to AussieBob]

Really sorry to hear that. Deirdre

[AussieBob in reply to AussieBob]

Thank you

[nevergiveuphope in reply to AussieBob]

Yes please

[e-mail]

many thanks

[AussieBob in reply to nevergiveuphope]

Will do later on tonight

[martinMorris in reply to AussieBob]

Can you please post the link or give the study title? Thanks a lot

[AussieBob in reply to martinMorris]

My email is [e-mail] if you want a copy

[AussieBob in reply to AussieBob]

Sorry that sounded very rude I meant it as a broadcast to any interested parties

[nevergiveuphope in reply to AussieBob]

Thank you for sending

[quilling in reply to AussieBob]

If you could post the link I would be interested

[deirdrecorr]

Thanks v much. Deirdre

[tieaknot]

I don't have an affected boy (only me) in my family but I am very interested in the study as well.

Is there a link to it? I am guessing this is all so new that it will take time to know what the long term outcomes are...

Thank you!

[AussieBob in reply to tieaknot]

Translants have been going on for a long time but you are right the understanding of ALD to AMN needs a lot of work. AMN has had a few transplanted patients but not with any released outcomes. The research field is concentrating more on AMN now

[randal_mcdon]

According to our oncologist and neurologist, once the transplant is successful the enzyme will be there and therefore, there should be no further deterioration of the spinal cord or adrenal gland as well.

[Quiller]

Mt son was transplanted at the Univ of MN in 1991. A successful sibling perfect match donor.. He is now 35 years old and doing well. Unfortunately nobody will know this as his doctor-Dr. Krivit passed away and since there has been little follow up. Until I reached out to inquire when I heard of BMT ALD boys having AMN later in life there was no contact to see how my son was doing. For this reason I hesitate to take studies to heart as I have not seen one that includes all boys or at least a majority from the beginning which would be the ones now old enough to experience AMN.

Just my take on things.