Bone Marrow Transplants and PIDD

I got in a rather heated discussion on Facebook today about bone marrow transplants . It seems we're talking a great deal about transplants lately. Here's the thing: it's not for the PIDD I have.

How do I know? I've asked every expert I could corner if there was a chance it would work for me. There's basically a greater chance of death than a chance of cure for me. This makes the whole idea of BMT kind of difficult to talk about for me. It is even more difficult when I see people giving information I know to be false to other people to raise their hope.

Fortunately, I think most adult patients realize that this is life. There isn't much escape from the diagnosis, once you have it and it's confirmed. My diagnosis has been confirmed by 3 doctors. The pulmonologist who initially gave me the diagnosis, a Fellow of the Royal Society (the first allergist accepted) who started me on IVIG, and the current group of doctors, lead by the former head of allergic disease at NIH. It's not going away anytime soon.

The folks most vehement about BMT being relevant/good for CVID patients were parents. Some of them have kids with more severe immunodeficiencies who were cured by BMT. Good for them. It's not going to cure the CVID kids and they wouldn't even have the chance unless they have something else requiring BMT. At least that's what the current medical literature states. Maybe there are other doctors who want to risk a patient who could live well for 90 years on a treatment that may kill them. I doubt these are the kinds of physicians you want to see anyway. I guess hope springs eternal, but I hate to see these people get their hopes up about something like this when I know it doesn't work this way.

One mother has a kid who has selective IgA deficiency. Talking about whether her daughter would be a candidate. NO! That's a TERRIBLE idea. All she has to do is take prophylactic antibiotics! I would never dream of risking her life on an experimental BMT. That seems absurd. Gene therapy? Maybe. BMT? Yeah, that's nuts. I can't even begin to tell you what a bad idea I believe that is. Maybe I've missed something, but the people I've talked to are all in agreement: no BMT for adult CVID and 90% sure none for CVID kids, either.

Now, there is GREAT evidence that SCID and several other PIDDs, CVID is just not one of them. Maybe it will be someday, and I'll be the first to get excited about the medical literature that comes out about it.

You also don't win friends with the truth.