Any ALD post BMT men or families here?

[quilling]

My son had a BMT for ALD years ago. I have been trying to find information on the whispers I hear about AMN occurring in this population. One doctor linked me to one brief article published. Just wondering how others are doing and perhaps looking to start a support thread for those who would be interested

[KazzyALD]

Hiya, my nephew is now 19 years post BMT. He’s doing great. He’ll be 28 this year.

[Quiller in reply to KazzyALD]

Wonderful!! Did his doctors say anything about AMN later inl life?

[KazzyALD in reply to Quiller]

I’m sure he was told that having a BMT doesn’t mean he’s been cured. 😢

[Sue95]

My son had BMT 9 years ago and is doing fine. There have been some reported cases of AMN after BMT but I don't think anyone yet knows whether this will happen to all or whether there are factors such as how advanced the disease was before transplant or the drugs used during transplant etc. All we can do is be vigilant and hope that better treatments come along.

[fmorgan458]

I do not fit your son's profile but I've had AMN for most of my life. I am 61 and still working by the grace of God. I've heard about situations with post BMT. A word of encouragement - there are a couple of groundbreaking therapies being tested right now. I expect if AMN is on the horizon for your loved one, within a year there will be treatments that work, and nothing as invasive as BMT. Things will be ok! FM

[Aaron98 in reply to fmorgan458]

Are you referring to MIN-102, or other potential treatments?

[Quiller]

Thank you. I hope treatments will be available for women too. Yup a bit greedy But I’m struggling and more things I didn’t even now were part of this. Voice and head tremors added in now.

[nevergiveuphope]

Hello. My son now 20 had a BMT 8 years ago and has been extremely well until recently when he has started to have issues with his bladder. He is awaiting an appt to see an Urologist but is worried this could be the start of something i.e. AMN

Following your thread x

[quilling]

Hoping your son has answers.