The Royal Disease (Hemophilia)
The Royal Disease is hemophilia. It is sometimes called by this name because it afflicted many royal families. The National Hemophilia Foundation or NHF states that, "This is because Queen Victoria, Queen of England from 1837 to 1901, was a carrier. She passed the disease on to several royal families" (b. p.1). Her son Leopold had hemophilia and died of a brain hemorrhage. It was also passed into the Russian, Spanish, and German royal families because Queen Victoria's daughters married into them. Not everyone knows what this disease is. It is not widely known exactly how it works or what all the symptoms are. There are treatments for this disease but not all are completely safe ones. Attitudes towards hemophilia vary, so do the attitudes of actual hemophiliacs. Hemophilia can be a very disabling disease with painful symptoms and harsh treatments. Hemophilia is a blood disorder. It is caused by a deficiency in clotting factors. Clotting factors are what make it possible for a person to stop bleeding once a blood vessel has been severed. There are two types of hemophilia. Hemophilia A is caused by low or complete absence of factor VIII [Roman numeral for 8] clotting protein. Hemophilia B is also known as Christ
Attitudes toward hemophilia are not always welcoming or understanding. "Popular misconceptions abound regarding hemophilia. If his condition is known, the hemophiliac is often regarded with apprehension and fear, and thought to be liable to constant bleeding, and thus incapable of a relatively normal existence" (Katz, 1970 p. 4). That is why, in a personal interview, the subject chose to be referred to as just "Will" (December 1, 2002). When asked what his attitude toward his disease was, he responded, "I don't like to think I have a disease. But, it sucks! I can't do some things that I would like to. It is not really slowing me down or anything. I go on with my life. The worst part of the whole thing is: What's going to happen with my kids, you know? It's not exactly something you want to pass down." Will has mild hemophilia A and does not require treatment except before surgery, such as when he had his molars removed. Will has not had many experiences of being treated differently for his disease but "not a whole lot of people know." The people he has told do not treat him differently, but he adds, "They don't touch on the subject much. But, one reason I don't think it changed much is because the people I did tell have known me for years, so it didn't change their attitudes much. I think it would be different for someone I just met." He did not change his life drastically after he was diagnosed with hemophilia. He did, however, have to make a few changes. When asked about the changes to his life, he retorted, "Gees, well, to begin with they made me quit football. My mom became real protective. I couldn't even make a sandwich without her telling me to be careful and not cut myself!" Many experts suggest that hemophiliacs have genetic counseling to deal with the array of questions one might have. Will has not had any genetic counseling but plans to when he and his wife decide to have a baby. He was asked why he was not openly forward about his hemophilia and in response said, "Because it really isn't anyone else's business. Especially someone I don't know well. Why do they need to know I have hemophilia?" In a self-report a hemophiliac said, "My interests vary or I loose interest when I get 'laid up', or what interested me when I was sick doesn't interest me when I'm well. I even think differently. It is probably that many don't know that I'm a bleeder. Some reasons-I don't want people to know-and, I don't give a damn either who knows it, that I'm a bleeder at other times. It depends on what I think or choose to do at the time" (Katz, 1970 p. 153). Will gave a last remark to send out to people, "Just that we're nothing to be afraid of. Some hemophiliacs have it worse than others but at least try to be understanding. And you can'
Some common words found in the essay are:
NHF Symptoms, According Mangrum, Steven Christmas, Queen Victoria's, Blood Banks, Lewis McArthur, Royal Disease, According Katz, Babylonian Talmud, Queen England, clotting factors, carson-dewitt 1999, gene therapy, royal families, katz 1970, factor viii, mild hemophilia, royal disease, bleeding joints, hemophilia inherited disease, genetic counseling, nhlbi 1996 2,
Approximate Word count = 1852
Approximate Pages = 7 (250 words per page double spaced)
|