Utah Hemophilia Foundation

Voices: Life as a Carrier
by Hannah Shawgo

I don’t have a bleeding disorder, but I am a carrier of hemophilia and four of my six brothers have hemophilia. When I was little I thought life with hemophilia was normal. My brothers went to the treatment center for checkups once a year, and whenever they got hurt, we had to infuse them. Didn’t everybody have to do that? The answer was no, and as I got older, I learned more about bleeding disorders and what they really meant. I watched my parents worry about money, because factor is so expensive, and worry about having health insurance, especially when my dad was between jobs or self employed. I watched them worry about my brothers getting hurt. I saw my mom’s anxiety when they left home, even just to go to school. We worked through it and have become stronger as a family because of it. But by that time I had come to the conclusion that we were different, and that was not okay with me.

That was about the time our family discovered Camp Valor. My brother went for the first time when he was nine and the next year I went. I loved camp and loved being somewhere that my family and our situation felt normal, or as normal as we could ever be. Kit, one of my brothers, learned how to infuse himself, and I learned to infuse too. Now we wouldn’t have to take a trip to the hospital every time someone had a bleed. I learned how to take care of bleeds and bruises, and I learned more about genetics, which I’ve always been interested in. It’s great because the older I get, the more things I have the opportunity to participate in and learn about.

One thing I learned about is all the medical advances that have been made, especially with the breakthrough of factor as a treatment for hemophilia. Since everyone used to have to get blood transfusions, the mortality rate for hemophiliacs was not very high as many of them would die of diseases from the tainted blood they would get. I remember that when my brother was first born he had to get blood transfusions, and my mom would cry herself to sleep worrying about him. So even though we have gone through a lot, we are grateful that bleeding disorders have become so much more manageable in the past few years.

Most recently I’ve been learning about being a carrier. I have not thought a lot about it before, but now that I’m seventeen, getting married and having a family are not that far away. Then I will have to be the one worrying about health insurance. My boys will have a fifty-fifty chance of having hemophilia, and my girls will have a fifty-fifty chance of being carriers. Unless, heaven forbid, I become the subject of camp gossip and end up marrying someone with hemophilia—then all our kids could have it.

It’s a lot to think about, and I should probably be more worried, but if there is one thing the Foundation has given me, it’s hope. I have seen how strong everyone in the bleeding disorders community is; how when life gives them challenges, they push through them and come out stronger on the other side. I have seen how everyone supports each other and everyone has a part to play: the doctors, the nurses, the teachers, and everyone that coordinates things. But there are also the kids in the community who are so much stronger than I ever was at their age and the families, who, like mine, have struggled at times but made it through. And then there are the mothers of these children. You mothers are the doctors, nurses, teachers, and coordinators for your own children, and I have so much respect for you. What it comes down to is that we are more than just a bleeding disorders community; we are a family.

So no, I don’t have a bleeding disorder. But I have been strengthened, nonetheless, by all the wonderful people I have come into contact with and hope that someday I can give back what they have given me. I will forever be grateful to be a part of this family.