Hi, Lisa want to share her strange story with you. "Today, as usual I stay home, read books, watch movies, spend some time in social networks. The reason for that is my disease that I have since childhood. When I was born, the doctors spotted some deviations in my medical tests. Later they found out that I have porphyria - vampire disease. The thing is that my organism lacks hemoglobin and I need to drink blood every day to stay alive. First 6 months of my life I spent in hospital getting blood transfusion. Later when I got out, I still needed to receive blood from external sources, but by drinking it. Since then my mom goes to hospital once a week to donate her blood which is split for 7 doses - 1 per day which we store in a refrigerator.
Doctors said that I need a brother or a sister because mom can’t be a donor during my whole life. That’s why when I was 7 years old my little brother Vlad was born.
I was a very strange kid because of my disease. I didn’t go to a kindergarten. I didn’t have friends at school, but I was very encouraged to learn new things. At first I was trying to hide my disease to avoid being laughed at. But when I got to 8th grade, it became worse, I felt bad because of sunshine, my skin started to shell because of ultraviolet. Doctors said I can’t go outside and since then I’ve been studying at home. After that everyone somehow found out about my disease. But I didn’t care at all because I didn’t have to go to school anymore.
I stayed home all day, parents were always at their jobs (they had to work a lot to support a family with 3 kids while one of them has a disease which means even more expenses for medication), my younger brother was at school and Marie was in the kindergarten, I felt very lonely and bored.
But all I could do is go outside in the evening just to have some fresh air. Moreover, I had to drink blood every day that made me puke.
One day mom got sick with a rare type of flu and doctors said she can’t be a donor until she gets better. Then I had to drink my 4 year old sisters blood. If only you could imagine how she cried when they took her to hospital to take some blood for me. I felt terrible as well, I thought I’m abusing a little innocent child.
But somehow when I started to drink my younger sisters blood, I felt better. My headache was gone, I became more vigorous, doctors said the reason was that I got used to moms blood and they did advice to alternate moms and sisters blood.
Recently I’ve been thinking that I’m going to lose my mind because of such life. I’ve already watched all the films I was interested in, read all the books that my mom brought me from local library. I hate all that, I hate staying home and talking only to my family. Guys I need your advice, how can I change my situation, how do I find some real friends?
Subscribe to my channel and give this video a like if you also think my disease is terrible. Thank you for listening.
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