My story

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So, as I kid, I was always ill. I had nausea, vomiting problems, and lots of stuff I can really recall. When I turned 11, I suffered pneumonia, I don't really know the details, but after going through that my bone/nerve pain started. I really felt a lot, lot of pain, to the degree I scremed, yelled and cried for hours on end. I started wearing sandals all year long because the overheating from socks and shoes augment my pain, a lot.

I was taken to doctors, both public and private, but none could find a solution. My dermatologist mentioned Fabry as a possibility since the red markings I've got on my leg can be a sympthom, but he couldn't do tests (and was just a far possibility for him). I suffered for years but, when I was 16, a very good cardiologist took me and made tests on me, trying to figure out what I had. Then, a very old familiar died and on the medical autopsy, they found Fabry, so they tested me immediatly. Bingo.

After that, a few months later I was put into treatment (enzymes). Sadly, as good as a doctor he was, he went to USA. I was given another doctor, which is less than stellar. Her solution to everything is to give me pills, which usually affect me in very problematic ways (like making me not able to eat, get humor changes, augment my pain etc). Sometimes, when she got pregnant (various times) I was put under another doctor and she was very kind, nice, attentive and listened, but sadly when my older doctor was out, she was again my doctor.

They discovered that my heart walls were too large, but the treatment has improved that. My cerebral scans atm are correct, but they do them very sparingly (I guess that they are very expensive). My kidneys are allright. My eyes have "cornea verticillata" and I have bad hearing. The pain hasn't improved, I have more tolerance to it because of all the years of pain, but it still hasn't slowed down. I have less crises in which I have to remain bedridden, but still, lots of pain almost constantly.

I've been lucky that now I have a girlfriend that really cares about me and tries to understand what I need. She sometimes might not take into account everything, but obviously she has her own stuff to worry about that can make her forget Im in pain. But she takes really good care of me, and I hope I can be with her whatever lenght I have left. Also I have to admit that although not all of them, most of the friends I had on my life were nice, and the ones that are still by my side are really nice and attentive.

Im now 28, I was diagnosed at 16. Im still jobless, the government won't give me a disability neither to find job nor monetary, I've had lots of socializing problems (not being understood, being made fun of, not being able to be with people, being asked forever why I wear sandals in very rude and condescending ways), I have semi permanent diharrea, I have pain most of time and in winter lots of days I can't function with normality nor go to class...

COVID has made it a bit more difficult, people look at me even worse for the sandals, my symphoms can be sometimes confused with the ones with COVID and people is very disrespectful. On the good side, this summer I had to work at a industrial bakery and people were very nice, undestood and tried to accept my conditions as long as I did as much I could and maybe next year they will get me once I finish my studies. Funnily enough, there were two cases of COVID in the factory, but I avoided being contagied (they are fine, besides of tastebuds and smell not working as they should).