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Sometimes people seem to believe that we blow our symptoms out of proportion. Most of us have heard the term “secondary gain” at some point in time. Spoiler alert: we don’t act like we are worse off than we are. We had hopes we had to give up on and replaced them with smaller dreams. We had long struggles accommodating to much smaller lives than we had intended to live. Over time, my balcony has become most of what I see of the outside world.

A bee on my chinese mint shrub (Elsholtzia stauntonii).

But luckily, my chilies don’t need watering every day. I’m really happy I still manage to grow some vegetables all by myself

I can also tell you a bit of the struggles of other patients I know.

CSH, female, 51 years old.

Because of my disease, I never managed to start a professional career. That was a disappointment, not a relief. Still, I managed to travel a bit through Europe. My health condition deteriorated over the years until I spent most of the time in bed. Through Fabry-specific treatment, I managed to recover a bit, and I could take up one of my hobbies again: photography.

Unfortunately, my treatment was cancelled, and now I will never recover enough to visit my little country house again.