Who is to Blame for my Disease?
When I watch television, I watch it for the drama and the crazy relationships between the actors and actresses, especially the McDreamies and McSteamies from ABC’s Grey’s Anatomy series. But while watching an episode of ABC’s The Practice something really stood out to me. A woman came into the health facility with her husband to figure out why she could not get pregnant, even though she knew the real reason. She was taking birth control because she was scared that she may have a fatal disease that she did not want to pass on to her child and did not want her husband to know. When she decided that she could not hide from the disease anymore, she consented to running some tests and finding out the truth. When the tests came back she was positive for Huntington’s disease. She wanted to run away so that her husband never had to find out but was convinced to stay and let him be apart of her life and together they made a decision to still have a child. Now this stood out to me only because one of the doctors tried to make sure the woman knew what she was doing; knew that there was a 50-50 chance that she too could pass the disease to her child. So I want to know, as a child or even an adult finding out that you have a disease that will kill you, who do you blame? Do you blame the person that passed it on to you; can you really blame them for taking a chance? This is not a question you can just answer by research; it is more personal than that. But this show made me want to know more about the disease and find out how you get it? Why you can not prevent it? And why would someone want to hide it from others? There has to be more than if you have the disease you’re going to die and your life is over.
The National Institute of Neurological Disorders and Strokes defines Huntington’s disease as follows:
Huntington’s disease (HD) results from genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. HD is a familial disease, passed from parent to child through a mutation in the normal gene. (1)
Some early symptoms of HD are mood swings, depression, irritability or trouble driving, learning new things, remembering a fact, or making a decision. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult and the person may have difficulty feeding themselves and swallowing. I could not understand why the lady in the show would want to run away from a man she loves just because she had a disease. I thought she was crazy because if I ever found out that I had a fatal disease I would want to be around people that cared about me, but knowing what actually happens to a HD patient allows me to see her side. She would not have any control over her behavior and would not be able to take care of herself. She would feel week and she would not want to put anyone she cared about through any pain or trouble. A disease like this can not be fought alone though, she needs the support from others and I am glad that she realized that. Her choice to have a child still troubles me because she knows how torn up she was when she found out that she had HD but she is willing to take that chance with a child:
Each child of an HD parent has a 50-50 chance of inheriting the HD gene. If a child does not inherit the HD gene, he or she will not develop the disease and cannot pass it to subsequent generations. A person who inherits the HD gene will sooner or later develop the disease. (1)
Why would she put her child through the same situation as she is going through? I understand the want to have a child of your own on a personal level but at the same time what if the child inherits the gene? Not to say that I think she is a horrible person because she chose to have a child, there is a chance that the child will not inherit the gene, but it is a difficult decision.
There are a lot of unsolved mysteries with this disorder and they vary among patients. A major mystery is that there are patients who have HD and have no family history of the disease. In fact, “In 1 to 3 percent of individuals with HD, no family history of HD can be found” (1). The rate of progression and the age of onset vary from person to person. In order to find out if a person has the disorder, a person would have to get a genetic test along with a complete medical history and neurological and laboratory tests to help diagnose HD. Physicians prescribe different medications to help control the effects of HD, but there is no way to stop or reverse HD. I do feel like a lot of counseling and comfort from loved ones is very important because to know you are going to die makes life seem pointless. Every patient carrying a fatal disease should receive help to realize that they can not give up and be reminded of the people who care about them. There are new findings everyday in research why people should not give up. Some progress has been made in the research of HD because the HD gene has been located and scientists are continuing to study what causes the gene to affect the human body. Researchers are working very hard to learn about this gene and that is all we can hope for. Researchers are breeding laboratory animals in hopes of duplicating the clinical features of HD so that they can learn more about the symptoms and progression of HD. They are implanting fetal tissue in rodents and nonhuman primates with the hope of understanding the functions typically lost by neuronal degeneration in individuals with HD.
Huntington’s disease is not a disease that can be avoided, but it is something that you do not have to do alone. There is research being done and I hope that soon there will be more answers about this disease and other diseases out in the world that leave patients with lots of questions. It can be very difficult to continue living knowing that you have no chance, but all we can do is be patient and have hope. The only question that I am left with at the end of this is, “What would I do, would I have a child and take the chance of them inheriting a disease, or do I lose my chance at experiencing God’s most precious gift to women; giving birth?”
1. http://www.ninds.nih.gov/disorders/sleep_apnea/sleep_apnea.htm National Institute of Neurological Disorders and Stroke