Welcome to HD in the Media section of the HOPES’ website!
- HD in the Media
This documentary follows 18-year-old Kristen Powers as she undergoes the process of genetic testing for Huntington’s Disease. The documentary premiered at Stanford University on February 21, 2014. More information about the film and its screening schedule can be found at www.twitchdocumentary.com.
In the documentary Twitch, filmmaker Kristen Powers tells the story of her own journey with Huntington’s Disease and her decision to get tested for the HD gene. The documentary walks audiences step-by-step through the genetic testing process, starting with Kristen sharing her family’s history with HD and ending with her receiving the test results that will reveal whether or not she carries the gene for the disease that claimed her mother’s life at the age of 45.
The film, which has a run time of slightly under 45 minutes, contains a series of interviews with Kristen’s friends and family members, as well as a series of video diary entries from Kristen herself. These vignettes provide insight into some of the emotions experienced by individuals and families affected by HD. Twitch also contains many photographs and home videos of Kristen’s mother, Nicola, that provide viewers with a glimpse into her life before and after being diagnosed with HD. The footage reveals Nicola’s awkward gait, one of the first signs that led the family to realize something was wrong, and includes scenes from the nursing home where she spent her final days.
In addition to sharing the Powers family’s personal HD story, Twitch also features interviews with several others with family histories of HD, and is careful to provide examples of at-risk individuals who, like Kristen, have chosen to get tested alongside the stories of those who have chosen to refrain from testing. The documentary makes it clear that the decision to undergo genetic testing is a deeply personal choice, and that an at-risk individual’s autonomy and decision should be respected. Twitch also contains an interview with, and a look into the life of, an individual who has been diagnosed with HD, thereby providing audiences with an opportunity to see what it means to be symptomatic.
The documentary also does a fine job of maintaining medical accuracy throughout. Interviews with several medical professionals, including a neuroscientist who walks viewers through a series of graphics that discuss the science behind HD inheritance and the huntingtin protein, are present throughout the film and are an accurate depiction of our current understanding of HD.
The one thing that viewers should be aware of when watching the film is that Kristen’s genetic testing process was accelerated for the purposes of the documentary. Those who watch the film may notice that the time between her appointments seems to go by fairly quickly, so it is important to note that while specific procedures vary between testing centers, there can be a waiting period of several weeks in between pre-testing appointments. Other than this, however, Twitch does a good job of providing its viewers with a look into what it means to be a member of a HD family, and what the process of genetic testing is like. The documentary is factually accurate, and doesn’t make any exaggerated claims about HD.
Disclosure: Kristen Powers is a Stanford University student and a HOPES student researcher. However, Twitch is a completely independent project of Kristen’s that is not affiliated with HOPES, and Kristen played no role in the writing of this article.
R. Reddy 2014More
In the season 8 finale of Scrubs, a popular medical TV show, one of the doctors diagnoses a 70-year-old woman with Huntington’s disease. While manifestation of the disease is more common during middle age, presenting symptoms later on is possible. JD, the physician on the show, does his best to explain the disease in a manageable, understandable way without neglecting to mention the patient’s son, Mr. Stonewater, is at-risk. JD offers Mr. Stonewater the genetic test that would reveal whether or not he had inherited the same faulty gene as his mother. Mr. Stonewater asks for some time to consider his options.
JD goes through the rest of his day fazed, as he knows how devastating the disease is and how difficult a decision it is whether or not to pursue genetic testing. When Mr. Stonewater informs JD that he does not want to take the test, JD respects his wishes.
The son, Mr. Stonewater, had told JD that his mom wasn’t acting like herself. When JD tries to examine her, she lashes out and accuses him of trying to attack her. JD comes back later with a diagnosis.
Stonewater: She has Huntington’s disease?
Stonewater: So what do we do?
JD: Unfortunately, there’s no cure. Eventually it will take her.
Stonewater: Oh geez.
JD’s internal monologue: Sometimes, you just have to barrel through no matter how much it sucks.
JD: And Mr. Stonewater, Huntington’s is caused by a faulty gene. And since your mother has it, you have a 50/50 chance of having it too. We can test you for it if you want.
Stonewater: If we find out that I have it early on, are there any treatment options?
JD: Nothing substantial yet. I can only tell you if you have it, can’t even tell you when the disease would hit you if you do have it. Could be in your 70’s like your mom or…
Stonewater: Could be sooner.
JD: Could be sooner. I’m so sorry.
Stonewater: Can I have a few minutes?
JD internal monologue: I’m so bummed about Mrs. Stonewater that I totally space and forgot what was wrong with Benjamin here. Is he the one with broken ribs? Nope. Maybe he’s the guy with sinus polyps. I don’t think there’s any polyps but he definitely has some oily skin issues. I should turn him on to that awesome apricot scrub I stole from Elliott. Come on, focus!
In an argument with Elliott, a fellow hospital employee and JD’s girlfriend
JD: NO, Elliott. I’m upset because Huntington’s disease sucks, Dr. Cox is a jerk and I’m such a crappy doctor I just got dumped by a patient. And nobody but you and Turk care that I am leaving.
JD’s internal monologue: Sometimes it’s deciding that you don’t want to know if you have a fatal disease.
Stonewater: Dr. Dorian, I decided not to take that test.
(JD walks away from the patient in a haze of his own internal monologue)
It is unusual for a doctor to recommend the genetic test without explaining the formalities that accompany it—genetic counseling, psychiatric and neurological evaluations as well as a blood draw. These aspects of genetic testing, along with the risks—discrimination, insurance spikes, depression, etc.—were probably not included in this episode due to the nature of the show (entertainment versus documentary). The purpose of this article is to clarify that doctors should always explain the full process of genetic testing before offering it, especially if someone has only been recently introduced to the disease.
Other than the exemption of these facts, JD does not misinform Mr. Stonewater about his genetic risk nor the fate of his mother and explains the facts clearly and succinctly. Within the context of a medical drama TV series, this episode overall accurately portrays the difficulties for the patient, the family, and the physician involved in dealing with the realities of an HD diagnosis.
K. Powers 2014More
This article was published on March 18, 2007 on the front page of the Sunday edition of The New York Times. The full article can be found here.
In 2007, the Sunday edition of the New York Times had a circulation of approximately 1.6 million. This meant that on Sunday, March 17 of that year, millions of readers across the world were introduced to Huntington’s disease (HD) by the front page article that was titled “The DNA Age – Facing Life with a Lethal Gene.”
The article, which ran at nearly 5000 words long, told the story of 23-year-old Katherine Moser, who had just tested positive for the gene for HD. Moser first became aware of the fact that HD ran in her family when her great uncle was diagnosed with the disease. Her own maternal grandfather began showing symptoms at the age of 50, but Moser’s mother refused to get tested, despite the fact that two of her sisters did (one sister tested positive and the other tested negative).
In the article, Moser explains that her mother did not want her to get tested either because if she tested positive, that meant that she must have inherited the gene from her mother. So Moser’s test results had implications not only for herself, but for other members of her family as well.
Eventually, after completing college and distancing herself from her mother, Moser made the decision to be tested at Columbia University Medical Center in Manhattan, and found out that her “CAG number” was 45, thereby indicating that her body contained the altered form of the huntingtin protein and that she would eventually start showing symptoms of HD.
Moser goes on to live life with the knowledge that she will eventually be developing HD. She actively chooses not to get married, works toward paying off her student loans as quickly as possible, and does what she can to seek support and teach others about HD. The article details her journey.
Despite only focusing on one individual who has yet to show the symptoms of HD herself, this New York Times article is fairly medically accurate in its description of the disease. The article provides a brief but factual description of HD as a trinucleotide repeat disorder by stating that on the fourth chromosome, “the letters of the genetic alphabet normally repeat C-A-G as many as 35 times in a row. In people who develop Huntington’s, however, there are more than 35 repeats.” It does, however, fail to mention the nuance that while individuals with 40 or more repeats do have the altered huntingtin protein, outcomes vary for individuals with 36-39 copies. However, this technicality doesn’t really come into play since it is revealed that Ms. Moser has 45 repeats.
With respect to maintaining medical accuracy, it is also important to note that while the article and the quotes contained in it refer to HD as the gene or disease that will kill Ms. Moser and other members of her family, medically speaking most people with HD do not die as a direct result of the disease. Rather, they tend to pass away from problems that arise as a result of the degenerative effects that HD has on the body. HD patients tend to die from an inability to fight off medical conditions such as infections and pneumonia.
The article does, however, do a good job of properly describing HD symptoms in a way that makes sense to the general public. Rather than using terms such as chorea to explain the uncontrollable movements that can manifest during the onset of HD, the article simply states that HD causes “cell death in the brain, leading Huntington’s patients to jerk and twitch uncontrollably and rendering them progressively unable to walk, talk, think and swallow.”
As mentioned above, in addition to medical aspects of the disease, the article delves into living with the knowledge of being positive for HD, and how that affects an individual’s decision making. Moser describes the various emotional stages that she went through after receiving her test results, including anger and an inability to face HD patients at the nursing home where she worked, but she makes it clear that she does not regret making the decision to get tested. However, the article does not make light of the genetic testing and explains to readers that choosing to get tested is a serious decision, and it is revealed that Ms. Moser was required to attend genetic counseling sessions and see a psychiatrist before getting tested.
Another important aspect of the article is that it discusses the family planning issues that arise after HD is diagnosed. Moser comments on how difficult she finds dating to be now that she knows she will develop HD in the future and she even mentions seeing a therapist who tells her that it is her “moral and ethical obligation not to have children.” This statement by her therapist is unfair and biased, and the article does touch upon that, mentioning that there are now new reproductive technologies, such as prenatal diagnosis and preimplantation genetic diagnosis, that can allow couples to ensure that their children will not have HD. However, options such as adoption, surrogacy, and sperm donation are not discussed.
Overall, the article provides an effective overview of life with HD for the general public, and serves its purpose in educating the masses about both the medical and lifestyle aspects of HD.
R. Reddy 2013More
Welcome to our Huntington’s Disease (HD) in the media section of the HOPES website!
Despite the fact that many people are not completely aware of HD and how it works, the disease has become one of the favorite “dramatic diseases” of mainstream news media and the entertainment industry. References to HD in popular culture include, but are not limited to, books (as evidenced by our site’s Literature Corner), television shows, films, radio programs, and newspaper articles.
The purpose of this section of our website is to approach all depictions of HD in the media with a critical lens media outlets often dramatize their depictions of medical conditions in an attempt to draw in viewers and readers. Symptoms are portrayed as much worse than they are in reality, incorrect diagnoses are provided, and false information is presented to audiences around the world.
To correct these misconceptions, members of the HOPES team will be going through various depictions of HD in the media to determine what aspects of HD are presented properly and what aspects are misrepresented. This section includes a synopsis of the media’s depiction of HD as well as a discussion of whether it was realistic and medically accurate.
While there are instances in which the popular media can be a helpful and accurate source of information, we hope this section of the site will remind you that is important to be cautious when obtaining your facts from these sources.
Feel free to use the site’s Contact Us form to provide us with the names of television episodes, movies, documentaries, etc. that you would like to see reviewed for this section.
2. HD in Scrubs
-R. Reddy, 7-10-13More