Welcome to Helping HAND Rocks!, a project of the Golden Nugget Sisters of Colorado. This site has been created by and for those of us managing HIV-Associated Neurocognitive Disorder (HAND). More and more, the medical world is realizing what we’ve always known: this virus does things to your brain even if it is currently suppressed. Nobody is exactly sure of the causes and the full constellation of symptoms, but there is finally a name for it. That brain fog you get out of nowhere? That fatigue that creeps up on you and pounces? That dissociative state? Yeah, that’s HAND, and no you are not the only one.
Today on World AIDS Day 2020, we launch this site as a project working towards as a solution. We don’t know all the answers — heck, nobody does. If enough of us come together and share notes, though, perhaps we can help solve this as we give each other support. The comments here will be lightly moderated: please be respectful of each other and of the original poster. Our goal is to add at least one medical professional to the posting team here — ideally, we will end up with a panel of them. In the meantime, though, share what you know. Share how you feel today. Help each other as you help yourself. This project is a labor of love and and act of healing for me. I’ve had the virus sine 1993 and there’s very little that it can do to you that it didn’t do to me.
The Research page has been assembled by a layperson with knowledge of how medical papers are presented and the ability to parse out what they mean for us. As more research is done and more studies commissioned, they will be announced with a post here as they are added. I have about a dozen more papers to read and add to that list which I will be doing over the course of the next few days: I want to ensure that my summaries are correct and concise before I add them.
Today, I ask that you join with me to create this resource for our community. We are stronger together.
Sister Innocentia Vulgaris