I was diagnosed with HS when I was about 3 months old. I started having blood transfusions soon after. I became very ill and after each blood transfusion I would get a little better but would go downhill fast. After several of the transfusions they surgically put a port in me so that they could more easily give me my transfusions. I spent quite a lot of my childhood on the cancer floor of the children's hospital. I began having monthly blood transfusions but I just wasn't getting any better. My body was killing me. After 28 blood transfusions I finally had my spleen removed which helped so much. No more transfusions after that and they took the port back out. Since then though the rest of my life has been affected. I was on antibiotics for years but after getting strep often they took me off of them in fear i would become tolerant to them. I was sick a lot even after my splenectomy. I had to be homeschool through elementary school as being around other children would cause me to get sick. I am 22 now and still get regular blood work. Im very prone to be anemic and often am. My bilirubon levels are often still messed up. My platelets will forever be high. I take folic acid daily for the thrombocytosis. My immune system is still not at a great level but my life is much more functioning now. If I am out in crowded public places I can pick things up more easily and feel my body trying to fight of even the simplest of infections. When my body is fighting off things like colds and such I get so lethargic. Its irritating because I am trying to live a regular life now but I do feel so ill so often. It is so so much better than it used to be, but I wish my body would just act normal. I also am aware that a lot of people with HS give birth to children with HS as well. I've been aware that this would probably be the case for years but have recently read a lot of stories and seen how prevalent it is. My childhood was honestly traumatic to me with all the hospitalizations and such and I would never want to put a child through that. I hate that I am too afraid to risk it and have children. I'm glad I am not alone with this illness though. It is rare but its nice to see the others who do have it as well.
KathrynRobyn KathrynRobyn
22-25, F
Aug 21, 2014