Hello, my name is Fabrienne and I’m a virtual Fabry patient and explainer.

My whole life has been influenced by this genetic disorder, but there is a treatment. Unfortunately, that treatment is not for everyone who needs it. That’s why I want to dedicate what little energy I have to my dream: that no patient should be excluded from a therapy that brings greater benefit than risk. Of course, I’m starting with Fabry disease. If you want to know more about that genetic disorder, please visit my study.

Of course, I’m more than just a patient. Like my non-virtual friends, I have my hobbies. I don’t just have a green dress (actually, it’s eight), I also have green fingers. Interested? Make sure to check out the balcony.

If you’re just here for a quick visit, I can offer you some coffee in the kitchen. There you can find my e-mail address, so you can send me a message when you have more time. But if you can stay a little longer, I would like to tell a bit more about myself.

This is me after shooting. What can I say … Fabry is not for the feeble.

In my free time, but also while working, I like to listen to music. My favorite CD is “Story of Hope” by Yuyoyuppe. The vocals on that CD are by Megurine Luka and Hatsune Miku. Those two virtual pop stars are a great inspiration. They taught me that being virtual doesn’t mean you can’t touch people. And that’s what I want to achieve. So, even though it probably won’t reach them, here’s a big 39 – thank you!

I also like manga and anime. “Bloom into you” is so beautifully drawn. I can’t keep up with that.

But a lot of my time I spend doing research for my videos, writing scripts, drawing slides, and the like. Sometimes, patients may have the feeling that medical science were a secret cult. As if that knowledge is only for the initiated, beyond the grasp of average people. But science is meant to be transparent. So I try to make that knowledge understandable for interested patients. Ideally, I would hope it helps you converse with physicians on somewhat more of an equal footing.