Charles Sabine was a war correspondent with NBC for 25 years. He covered many conflicts around the world including the Rwanda genocide and the Indian Ocean tsunamis. He even earned an Emmy during his television career. However, four years ago, his life changed. Sabine decided to get tested for Huntington's disease, a disease that runs in his family. In fact his father and brother both had it and it is deadly and incurable. Sabine had a 50-50 chance of having the gene for this disease and he in fact did inherit it. This disease slowly but surely destroys a person's nervous system. First a person loses the ability to walk normally and then the ability to speak.
At first Sabine did not want to get tested, because he did not want to know his fate. He knew that if they did have the Huntington's gene, he would die in a similar way to his father and soon his brother. However, Sabine did decide to getthe test and when he got the results saying he had the disease, he kept it from family and friends for three years. About a year and a half ago, he and his wife made a risky decision to have a child. Luckily for him, his 17 month old daughter did not inherit the deadly gene. Now, Sabine is working to raise awareness about Huntington's disease. This disease afflicts about 30,000 individuals in the country and their friends and family. He wants to do his part and talk about his personal struggle publically before he no longer can. "He now works tirelessly to get word out about Huntington's disease, giving lectures around the world, drumming up research dollars, and volunteering for genetic studies and other research."
This is such a sad story, but I really admire Sabine for accepting his fate and wanting to help others by possibly finding a cure. He has said, " People like me are valuable because we can be the guinea pigs for the future." He is not blaming anyone but making the best of his situation. The technology that we have today amazes as well. Although it is a simple blood test that can determine if someone has Huntington's disease, years ago, that wasn't possible. It is such a weird thought that you can determine your fate and know how you are going to die by going to get a blood test. One day Sabine did not know his future, but the next, he basically knew how the rest of his life was going to play out. "She buried [my father] with this disease, and she's now going to bury my brother and then me, most probably," he says of his mother. My heart goes out to Sabine and his family and friends. If there was a chance that you could inherit Huntington's disease, would you want to get tested or would you rather wait and let the disease happen if it happens? This is basically saying, would you want to know the fate of the rest of your life?
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If I was in Sabine's situation, I would probably take the test to see if I had the disease. Since I already know there's a high probability that I inherited it, I would rather find out and live a meaningful life before the effects set in than continue leading my same life in fear that I will start feeling the effects. Because he found out in advance that he had the disease, Sabine has been able to raise awareness about Huntington's-something that he probably would not have done had he not discovered his fate.
-Julia B.
I'm not too keen on the whole disease thing, but I thought simply having the gene does not mean that they will get the disease. It's if that gene is somehow flicked on that the person gets the disease. Like for instance, a lot of people have the gene that causes breast cancer, but not everyone gets breast cancer because that gene does not get turned on.
-Yuzo Yanagitsuru
That's really interesting Yuzo; I've never heard of anything like that before. Can I ask how the gene gets "flicked on" or off? Does it depend on a person's lifestyle choices or is it completely independent of anything except for other genetic factors?
Yuzo, while it is true that some genes that have the potential to be harmful end up not harming a person because they are not expressed, I believe that Huntington's Disease does not fall under that category. HD results from a mutation of a gene that produces a protein that is essential to biological development. If you were not born with the gene being expressed, you would not live very long. That's why if you have the mutated form of the gene, you will have HD.
I, like Sabine, would get tested for the disease. I feel that knowing my fate would allow me to live a more meaningful life and allow me to take advantage of the time I have. I also think that it would be very unfortunate to live life thinking I might have the disease if I really did not. In my opinion, it is better to face the truth head on than to avoid it.
I have no idea what it's like to suffer from Huntington's nor do I ever hope to, but I must say that people who do suffer from it have my ultimate condolences. Mental diseases are just as destructive as all other diseases. I'm just glad that Sabine's daughter didn't inherit the gene. Still a risky move though, not one I would have taken, especially since it's a life at hand. At least that's one thing the Sabines wouldn't have to regret.
-Andrew Oxendine 3°
I know this is probably not relevant, but there is a character in the popular TV show House who finds out that she has Huntington's and throughout the show her condition is often brought up.
Anyway, Huntington's is a horrible disease, but through research, I believe that scientists will someday find a cure for it. Probably through some form of gene therapy.
And in response to Preston's question...if he ever checks this thread again...a gene can get "turned on" when certain chemical groups known as methyl groups attach or detach from the initiation site of a gene therefore turning it on or off. In other words...there is something that can block a gene from working or if removed, will cause the gene to start working again.
~Victor Hung
I would most likely get tested if I were in the same situation as Sabine. it is a sad story for him personally, but it is nice of him to raise awareness of this deadly illness. I hope that one day people find a cure(who wouldn't)for Huntington's disease.
I think if I was Sabine, I'd get tested right away. Even though it may be scary to know that if one has the disease or not, it is necessary to get tested because it's a life threatening disease. Thankfully Sabine informed the world on his story, which can help many people the same disease to get tested.
If I were in the same situation, I think I would rather know if I had the disease. Although this would create a high amount of stress for myself and my family, I think it would be best if we were informed. And I agree with Sabrina, if I knew of this disease I would make use of the time I have
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