Post BMT: Hi I was wondering if there were any... - AMN EASIER

AMN EASIER

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Post BMT

nevergiveuphope profile image
22 Replies

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

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nevergiveuphope profile image
nevergiveuphope
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22 Replies
AussieBob profile image
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 profile image
deirdrecorr in reply to AussieBob

Hi . Would you mind also emailing it to me? I have2 transplanted sons. My email address is aaronanddeirdre@googmail.com Thanks. Deirdre

AussieBob profile image
AussieBob in reply to deirdrecorr

Yes I will do so in the next few hours

AussieBob profile image
AussieBob in reply to deirdrecorr

When and where were your sons transplanted?

deirdrecorr profile image
deirdrecorr in reply to AussieBob

Bristol UK, both in 2001

AussieBob profile image
AussieBob in reply to deirdrecorr

Thanks stay in touch if you wish

deirdrecorr profile image
deirdrecorr in reply to AussieBob

Thanks. Have you a transplanted son or nephew?

AussieBob profile image
AussieBob in reply to deirdrecorr

No he died before he could have one

deirdrecorr profile image
deirdrecorr in reply to AussieBob

Really sorry to hear that. Deirdre

AussieBob profile image
AussieBob in reply to AussieBob

Thank you

nevergiveuphope profile image
nevergiveuphope in reply to AussieBob

Yes please

elphickclare@gmail.com

many thanks

AussieBob profile image
AussieBob in reply to nevergiveuphope

Will do later on tonight

martinMorris profile image
martinMorris in reply to AussieBob

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

AussieBob profile image
AussieBob in reply to martinMorris

My email is bobwyborn@bigpond.com if you want a copy

AussieBob profile image
AussieBob in reply to AussieBob

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

nevergiveuphope profile image
nevergiveuphope in reply to AussieBob

Thank you for sending

quilling profile image
quilling in reply to AussieBob

If you could post the link I would be interested

deirdrecorr profile image
deirdrecorr

Thanks v much. Deirdre

tieaknot profile image
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 profile image
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 profile image
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 profile image
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.