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by homero 2777 days ago
Did you need immunosuppressive treatment?
1 comments

Nope, and I didn’t have any noticeable immune response. Literally no side effects to speak of, it was all very easy, just a simple injection and overnight stay in the hospital for monitoring.

They tested me before for immunity to the virus family they engineered, to make sure I didn’t already have immunity.

Other than that they are monitoring my liver closely but there hasn’t been any elevation in blood tests or structural changes (observed via MRI).

The hell with bioethics hand-wringers... we should be mending and improving people's genes whenever and wherever we can add net good.
not all "bioetchics hand-wringers" are against gene therapy ( in fact you too are taking a bioethical stance).

bio-ethicists aren't only interested in the net good of the patient of the therapy, but also in any harms onto others: perhaps child victims of organ trade (for example sourcing fibroblast stem cells from unnecessary circumcision of infants), perhaps harvesting organs from political, cultural or criminal prisoners, or from refugees, and yes, some of them are worried about viruses ...

How was the recovery process? Did you feel better immediately or was it in small amounts and over several weeks?
There was no recovery process to speak of in a traditional sense. Since this is a chronic condition, I’ve just simply gotten used to the aches and pains over the years. I really didn’t start to feel any different until a few weeks ago, when I realized I had forgotten to take my pain and arthritis mediciation, but I wasn’t having any pain that day. I went off it and I haven’t had to go back on it. My joints all feel noticeably better, there’s basically no pain anymore when I walk. I’d have some days like this before but nothing this long sustained before.

It’s too early to tell but my doctors think that with a sustained factor level, my body isn’t under as much stress from the bleeding all the time and can focus on repairing the damage caused from a lifetime of near constant bleeding.

That's awesome to hear. I'm so very happy for you. Looking forward to a world where these gene therapy solutions are available to more and more people for a wider range of illnesses.