Everyone has problems. That’s part of life. In fact, we have that old phrase, “That’s life.” Usually, people whip out said phrase whenever something doesn’t go the way they want it to.
Medical issues are especially concerning in that things don’t go the way you expect them to. For a pair of sisters in Australia, this is the life that they live with hemophilia.
Most people don’t realize that women and girls can have hemophilia. You might be thinking to yourself that it’s a boy disease and girls are just carriers. Unfortunately, that’s not the case. Hemophilia is a genetic disorder. That means that the genes in the person determine if the condition exists.
Hemophilia is present in the X chromosome only. Since boys only have one X chromosome, if the X has the mutation, the boy has the disease. Girls have two X chromosomes. If only one X has the mutation, the girl is a carrier of the disease. If both X chromosomes have the mutation, the girl has hemophilia. This is incredibly rare. Both parents would need to have or be a carrier for hemophilia for their daughter to have it.
Not only do these two Australian girls face all the challenges of hemophilia, but they face the resistance of others to accept their disease. Consider the possible issues that these girls must face.
Before diagnosis, the girls may have had extensive bruising because of microbleeds. If mom or dad takes a little girl covered in bruises into the hospital, it is entirely likely that they will be investigated for child abuse.
In school, the other students would tease the girls for lying about their disease. Teachers, and even the school nurse, couldn’t or wouldn’t believe them. During the HIV and AIDS-crazed 1980s, the curiosity was balanced out only by the fear of their condition.
As the girls became women, their bleeding disorder created a certain amount a trepidation in their parents. Mom, especially, was concerned that their menstrual cycles would result in severe complications.
The most important part of facing down any sort of challenge is to recognize what is going on and to realize that you are not alone. Getting the word out is another way that the whole family can help future generations from facing the same sort of stigmas.
