My doctor told me to prepare for the ALD gene therapy trial

[jayxie]

My doctor told me to prepare for the ALD gene therapy trial,

The first is called, the second is amn, I'm looking forward to it.

I want to know that if the ABCD1 gene can be expressed normally, it will not cause side effects such as tumor. So what changes will happen to our bodies?

The body can metabolize very long chain fatty acids normally, and the disease stops progressing. Will the shed myelin be repaired slowly? What do you think of the potential benefits of gene therapy for amn?

[AussieBob]

No as it is the body’s You are not transplanting someone’s organ

[AussieBob]

My email address is [e-mail]

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Jayxie

What exactly is this trial of gene therapy, where is it being conducted, and who else is on it?

This sounds interesting but I have not heard of it.

Until more is known, I would say that side effects are unlikely. But, I would say (as a non-scientist) that putting new genes into your cells always carries some risk because we still don't know if it can be done perfectly, or whether new genes express themselves exactly as they should.

As for whether myelin would be repaired, this is unlikely. As far as I know, no one has proved that myelin can repair itself - not like our skin. The most likely outcome would be that the myelin would stop degrading. That would be great for you.

Please tell us all more.

Chris

[jayxie in reply to COwithAMN]

Because covid-19 was delayed, I expect the experiment to start by the end of the year,

If amn test is carried out, I will inform you of the latest news

[Catrick in reply to COwithAMN]

Hello Chris,

Women are never included in these trials. I wrote and complained some time ago, I'll see if I can find the reply.

Stay safe, Catrick

[jdw_law in reply to Catrick]

Amen! They are always for the men.

[COwithAMN Administrator AMN EASIER Volunteer]

Thanks, but what exactly is this trial of gene therapy, where is it being conducted, and who else is on it?

[Travzw in reply to COwithAMN]

I saw something recently, but I can't remember. They are doing umbilical cord blood gene therapy and it's supposed to work better than the traditional gene therapy. They've also worked out the chemo portion to be better for the patients. They have a better plan on how to start and stop the chemo.

[Memphiscat2017]

How do you get on this trial?