New film unmasks the raw reality of Huntington’s disease

A new, award-winning documentary film, The Huntington’s Disease Project: Removing the Mask, reveals the raw reality of HD so thoroughly and authentically that it should become required viewing for health care professionals and trainees in the neurological field.

This 100-minute film, not yet released widely, is also a must-see for the HD community and the general public, although it will likely cause many to recoil from what it calls the “monster” tormenting HD-affected individuals and their families.

As an HD gene carrier and long-time grassroots advocate who saw his mother succumb to the disease, I consider myself a hardened observer.

Even so, Removing the Mask shocked me with its exploration of the lives of HD-affected individuals and caregivers, including producer and narrator James Torrington Valvano, diagnosed with HD in 2009 yet still able to function sufficiently to make the film.

With an anthropologist’s eye, James probes the many layers of HD reality – and the hearts of its victims.

Removing the Mask delves into the wide range of issues HD families face, including medical challenges and social disruption.

The HD community will recognize many of them, although they are rarely discussed so openly in a medium such as film: ignorance about the disease, misdiagnosis, denial, family tensions, rage and aggression, genetic testing, financial devastation, caregiving, and loss of the affected individual’s independence, to name just a few.

Removing the Mask does not shy away from the most difficult themes: inaccurate racial interpretations of HD by physicians, associated sexual disorders, suicide, the exclusion from clinical trials of HD people with suicidal tendencies, and mercy killing. It also pays close attention to juvenile HD, often omitted in the overall conversation about HD.

In striving for a comprehensive view of HD, Removing the Mask adamantly advocates for a broad understanding of the disease by medical and psychiatric professionals, relevant government agencies, and the public. This includes recognition of HD as not just a movement disorder, but also one involving cognitive, emotional, and behavioral difficulties.

Although Removing the Mask mirrors the detailed information about HD known to specialists, many non-specialist health professionals don’t understand the disease.

Removing the Mask is not a textbook-like film but a genuine illustration of the disease. Rather than a medical or scientific authority explaining HD for us, in the film we feel the pain as the affected and their loved ones tell us what it's really like to have the disease.

James brings it all to life with testimonies that are brutally honest.

You can watch the Removing the Mask trailer in the video below.

Shaving seven hours a day

At James’s invitation, I recently watched the film by myself in a private online session on my home computer.

One of many poignant segments concerns John and Sue Wright of Kent, England. John, who liked to work with computers before he fell ill, was diagnosed with HD in 1992, and soon thereafter Sue became his caregiver. In the film, she describes his mental decline.

“He was waking every morning threatening to kill me and throw me out the window,” Sue recalls. “He was sharpening knives in the kitchen constantly, and he was assaulting me. I always reported the assaults, for my own safety, to the police, but never wanted him prosecuted. I knew it was the disease making him behave this way, and not his intention.”

To avoid harm, Sue moved out, although she returned home up to seven times each day to care for John.

John developed a condition experienced by a number of HD-affected individuals: obsessive-compulsive disorder (OCD).

“He was obsessed with any paper towels, tissues, etc.,” Sue remembers. “He would pile them up and keep them. If I attempted to throw them away, he would retrieve them from the rubbish bin and put them back in their piles.

“He was also obsessed that any facial hair would suffocate him. So he started shaving for up to seven hours a day, making his face red raw.”

Starving himself to death

Sue had to have John legally committed to a mental health facility.

“This was a horrific experience, as the police were brought into the house in riot gear, and he was dragged out of the house still trying to eat his lunch,” she explains. “My twin Sheila was wonderful. She stepped into the house when [it] happened so that John would blame her rather than me for what happened. This gave her nightmares for quite a considerable period but thankfully did preserve John’s and my relationship.”

Over the next several years, John lost his ability to walk and speak. Eating also became extremely difficult. When asked if he wanted a feeding tube, Sue says in the film, John violently shook his head no.

“John indicated that he’d had enough when he started refusing to eat and drink,” she says. “His quality of life was non-existent, and I knew he wanted it to be over.”

Mercy killing is illegal in the United Kingdom. “My only option was to help him as he starved himself to death,” Sue says plaintively.

John died in 2006. He was 56.

‘We have a face’

At the film’s outset, James declares that the HD monster “caused so many people across the world to hide behind masks, masks of silence.[…] It was time to destroy the monster. Our goal was very simple: to remove the mask of Huntington’s disease.”

He adds: “It was time to show the world that we have a face.”

A former mental health care professional and small business owner forced to quit after his diagnosis, James began work on the film in 2011, with a powerful short showing people taking off masks and saying “I am no longer a faceless face” (click here to read more).

Before the short, he had never made a film, although he had studied communications, film, and psychology at St. John’s University in Jamaica, NY, for a while in the early 1990s.

James decided a film was the best way to get out the word about the disease.

“It frustrated me and so many people that no one was telling or showing the real truth behind he disease,” he said. “Advocacy is more than walking, fundraising, wine-tasting, and dinners. All of those ways to advocate are important, but they alone were not working. How can we expect the world to know about HD if we are not willing to get outside the box?”

In addition to his work as an advocate, James cares at home for his older brother John, now in the advanced stages of HD, with the assistance of his spouse, Ian V. Torrington. James’s father died of HD and cancer. Five other siblings and numerous other relatives are at risk for HD. Ian also cares for James.

Ian V. Torrington (left) and James Torrington Valvano (personal photo)

To support the project but also to network globally to raise the profile of HD, James and other advocates from HD families formed WeHaveAFace.org.

Recently granted nonprofit status, the organization provides online and mobile support to the HD community. Activities include fundraising for HD research and family assistance, online support groups, the production of a quick reference guide about HD for police and rescue workers, and a mobile application with ample information about HD.

A number of WeHaveAFace.org’s U.S-based regional advocates tell of their struggles with HD in Removing the Mask.

According to James, he spent less than $7,000 on the film, with funds coming from a t-shirt campaign, other small donations, and “heavy hitting on my credit cards.”

‘We need the world to watch’

According to my conversations with James via Facebook, he and his film team held “dozens upon dozens” of Skype calls and exchanged thousands of e-mails in the background research for the Removing the Mask.

Not everybody agreed with James’ direct approach. According to him, one advocate broke off from the project “because I was tackling suicide.”

James himself admitted experiencing powerful emotions during the project.

“Filming the topic of suicide was one of the most difficult and painful experiences in my life,” he wrote in a digital journal kept during the production. “As a filmmaker you want to get the rawness of the topic, but as a person with Huntington's disease, my heart and soul ached through every second.”

In the film Cindy Dupree, an HD-stricken woman from Alva, Oklahoma, and her husband Ron speak hauntingly about suicide.

“I am not ashamed or afraid to talk openly about suicide, because it affects so many people within the Huntington’s community,” says Cindy.

“I know that she battles thoughts of suicide each day, and I fear that I will receive that call that ‘your wife has just taken her life,’” says Ron. “I can only imagine how other caregivers feel. I know they are fighting the same battles we are. I am angry a lot of the time and do my best to realize and understand that it is the disease and not my wife.”

Cindy says that knowing Ron and their three daughters rely on her keeps her “grounded.”

“The documentary was never created for the Huntington's community,” James added. “We had to get outside the box and set our aim on the general public. Although I believe and hope that the film will resonate within our own community, we need the world to watch exactly what we go through.”

How to see the film

WeHaveAFace.org celebrated the official launching of Removing the Mask on June 20 in James’s hometown of St. Cloud, FL. He has entered it in about a dozen film festivals in the U.S. and abroad.

It won in the category of best feature documentary in the July 2015 monthly competition of the Miami Independent Film Festival.

James hopes to make the film available to the general public in early 2016 via DVD, Blu-ray, and Vimeo.com. He is also hoping to include it on Netflix and iTunes.

For now, organizations and support groups interested in showing the film as part of an HD awareness-building or fundraising event can do so by registering at this link.

The dilemma of illness

The Huntington’s Disease Project: Removing the Mask joins a group of high-quality documentaries about HD launched in recent years, including The Lion’s Mouth Opens, a courageous HBO film about filmmaker-actress Marianna Palka’s decision to test for the genetic defect.

With its unapologetic presentation of HD, Removing the Mask will stir controversy not just about Huntington’s, but also the way in which people and institutions deal with the terrible challenges of neurological disorders in general.

After watching the film, I kept remembering the dilemma I faced six years ago when I was directing the construction of an independent website for the Huntington’s Disease Society of America’s (HDSA) San Diego chapter, whose board I served on.

Should the homepage use positive, “feel good” images to advance our cause? Or should it show the harsh realities of HD? One of my fellow board members, a public relations specialist not from an HD family, cringed when I showed him some of the photos of gaunt HD-affected individuals I was proposing for the site. I indeed used some of those photos on the site (which is no longer operative).

I don’t know if I did the right thing.

I believe that Removing the Mask faces the same dilemma. It’s raw, but will it ultimately be effective?

I believe that it can be in the health care community. Removing the Mask would make a fine multimedia companion to HDSA’s A Physician’s Guide to the Management of Huntington’s Disease.

Professionals and students in the medical professions must see this film. So must public officials like the administrators at the Social Security Administration and doctors who evaluate HD-affected individuals for disability. And so must general medical practitioners, neurologists, psychiatrists, and others who potentially come into contact with HD patients.

I’m hoping that the Miami festival award indicates that the general public is also ready to help destroy the monster of HD.

(Note: I have a very small part in the film, where I take off my own mask, but otherwise had nothing to do with the content.)

Outrage over video of police’s rough handling of man with Huntington’s disease spurs calls for justice, awareness

Amateur video has proven crucial to holding police officers accountable around the country.

Now such video of a police encounter with a man suffering from Huntington’s disease – held down for nearly ten minutes as he struggled to breathe and pleaded for help – shockingly reveals  how rare disease communities must fight against profound ignorance, discrimination, and hostile treatment.

In the small town of Westover, WV, police on September 6 arrested Jeffrey Bane, a 39-year-old father of two from nearby Morgantown, WV, and charged him with disorderly conduct, obstructing an officer, and battery on an officer. At least one officer and a cruiser from the neighboring Granville, WV, police department were also at the scene.

From their actions and attitude, the officers seemed to have no inkling that Bane was ill.

It’s a reminder that police should all be exposed to the Law Enforcement Training Guide produced by the Huntington’s Disease Society of America (HDSA), and that those afflicted by the disease would be wise to carry the “I Have Huntington’s Disease” cards recommended by HDSA.

Behind the incident

Bane has HD, which has left him unemployed. He comes from a family with a long history of Huntington’s and has suffered from the disorder for about five years, though he can still accomplish many daily activities. His symptoms include chorea, the involuntary, often jerky movements typical of the disorder.

Bane had been walking down the street with his toddler daughter in a stroller and carrying his infant son when, in response to two 911 calls alleging concern for the children, police accosted him.

According to a local newspaper that had access to the official police report, the police said that Bane “appeared to be under the influence of narcotics, handled the children roughly and became agitated as officers spoke with him about the children.” The police said the children seemed to be “overheated.”

Jeffrey Bane's police mug shot

When asked what “provisions” he carried for the children, “Bane struck the stroller violently with his hand, pushing it forward abruptly while his infant son was still seated inside,” the official complaint stated. When the officers attempted to restrain Bane, he began to fight. He allegedly kicked one officer and tried to spit on others.

Sara Bostonia, a Grafton, WV, resident and healthcare worker who was driving to her mother’s home in Westover, saw Bane on the ground and started filming the scene with her smartphone. She had not previously known Bane.

“The first thing I saw was blood,” Bostonia said in a phone interview on September 13. “That’s why I stopped. I saw a man with a bunch of other men on top of him. There were no [police] lights on. I just thought there was something wrong about the whole way he was moving.”

Bostonia said that she rolled down her window to get a clearer view.

“I couldn’t believe what I was seeing,” she said. She then started filming.

“I’ve never done that, never,” she continued. “Once he started the gurgling and screaming for help, I could tell he was completely pinned to the ground. I said ‘stop it’ while I was getting out of my car.”

In the video, as the officers hold Bane to the ground, he displays frequent episodes of chorea.

“Stop it!” the officer holding Bane’s head to the ground shouts. Another says: “Stop fighting us.”

“I can’t breathe, goddamit,” Bane says desperately. “Help me. I can’t breathe…. Help me, sir, please help me.”

As Bane appears to choke, one of the officers orders him to “stop spitting.”

“Help me, please,” Bane pleads again. “I’m not trying to fight you guys.”

The officers misinterpret involuntary movements in Bane’s legs as attempts to kick them. They clearly had not been trained to assess the possibility that such actions resulted from HD (or any other condition).

“The scene portrayed on the video is tremendously upsetting and sad to anyone who recognizes the chorea and erratic gait that Huntington's disease causes, that could have been largely or solely responsible for the behavior that led the police to the scene,” Martha Nance, M.D., the director of the HDSA Center of Excellence at Hennepin County Medical Center in Minneapolis, MN, and the author of the preface to the Law Enforcement Training Guide, wrote in an e-mail. “In the courts, we assume that people are innocent until proven guilty, but on the street, there may be an assumption of the worst until the situation defuses.”

During the incident, the children lost contact with their father. They do not appear in the video. Contacted by the police, Bane’s girlfriend Delsie Stup, the children’s mother, came to the scene to pick them up.

Without knowing Bane nor his HD status, Bostonia put the video on her YouTube channel on September 7. To date it has had nearly 120,000 views.

Bostonia said she posted the video because she wants all the facts “out there. Public scrutiny of the facts is paramount. It is our job. We shouldn’t have to police the police, is how I feel about that. As citizens, we do a pretty good job of policing ourselves.”

You can watch an enhanced version of the video on another YouTube channel below.

After receiving medical treatment and posting bail, Bane was released about 48 hours after his arrest.

“Unfortunately, situations like what happened to Mr. Bane happen far too often in America and around the globe,” HDSA CEO Louise Vetter said in a phone interview on September 12. “They are heartbreaking and tragic and they’re why we work so hard to educate the community at large about Huntington’s disease. That’s why it takes all of us sharing our outrage but also committing to educating about Huntington’s disease so that circumstances like this aren’t repeated.”

According to Dr. Nance, no statistics exist on arrests or incidents with the police involving HD-affected individuals. However, difficulties with the police and/or misunderstanding of symptoms – usually mistaken for drunkenness or drug usage – have occurred in many HD families. In 2007 I myself visited a San Diego HD man in jail improperly charged with public drunkenness. HD-affected individuals can appear drunk because of their chorea and also slurred speech.

Outrage in the community

The Bane incident has received newspaper, television, and blog coverage in the U.S. The London Daily Mail also ran an article.

The video has also stirred controversy in the greater Morgantown area of West Virginia, home to small towns dependent on the coal-mining and natural gas industries as well as intellectual life at West Virginia University (WVU), with nearly 30,000 students.

“The arrest video on YouTube of Granville man Jeffrey Bane has caused outrage and accusations of police brutality from those who feel Westover and Granville Police were unfair to a man suffering from Huntington's disease,” observed a report on WDTV, a Bridgeport, WV, TV station.

According to that report, the city of Westover views the incident as a “non-issue.”

"The outrage of anything even close to police brutality in the case of Jeff Bane is totally unwarranted,” Westover Mayor Dave Johnson said in a statement released to the station. “If I had any doubt whatsoever I would be the first to bring the officers involved to the carpet, so to speak.… The City of Westover has moved on."

According to Bostonia, the community was indeed “in an uproar” over the incident. In the wake of intense national discussion following this summer’s police shooting of Michael Brown and riots in Ferguson, MO, “people are trying to get a protest together,” she said. “A couple weeks ago they held a protest for Ferguson with about 20 people down at the courthouse. This one hits closer to home. I wouldn’t be surprised if it happens here, too.”

Sara Bostonia (personal photo)

At the same time, people are worried about the community’s security, she said.

“Everyone in town is invested in this incident in some way,” she explained. “Maybe their brother’s a cop and they’re afraid. Everyone is connected in some way to one another.

“I didn’t want to take that video. I wanted them to detain him properly.”

‘Justice for Jeffrey’

Bane and Stup have issued no public statements, but Bane’s nephew Josh Bane, 22, emerged as the family spokesperson, setting up a public Justice for Jeffrey Bane page on Facebook.

As the son of a father (Jeffrey’s brother) who has already developed HD symptoms, Josh has a 50-50 chance of inheriting HD.

Josh Bane (personal photo)

Josh alleges that the police violated his uncle’s rights. In the search for truth about the incident, he has sought to obtain and release all related information. The extended Bane family is also considering the possibility of legal action and may seek donations to help cover the cost.

“At the end of the day, someone was detained unlawfully for ten minutes and he was held down and choked on his own blood as he begged for help from anybody,” Josh Bane said in a phone interview on September 13. “It doesn’t take that long to detain a 160-pound man with three officers. They mistook his involuntary movements for resisting, when in reality he suffers from Huntington’s – all of this in front of his two children, who were unattended.

“They could have easily cuffed him and put him in the car in 30 seconds and continued on as if it were routine. For some reason, they wanted to punish him for ten minutes. It was a brutal timeout, if you want to be sarcastic about it.”

According to Josh, the police sprayed mace on his uncle and punched him in the face. In the video, blood covers Jeffrey’s face. The Justice for Jeffrey Bane page includes photographs showing the injuries allegedly suffered by Jeffrey in the incident.

View of some of Jeffrey Bane's injuries allegedly suffered in police incident (photo from Justice for Jeffrey Bane Facebook page)

Going to the park

Josh emphasized that, despite suspicions of child abuse and drug usage, the police did not charge Jeffrey with those crimes. He described as false one media report asserting that Stup told police Jeffrey had an “opiate dependency” and that the couple had fought and she was planning to leave Jeffrey. He added that when the officers questioned him about drugs, Jeffrey became “agitated,” offering immediately to take a urine test.

“She wasn’t even home when Jeff left with the kids,” he said, adding that the couple has strived to “hold it together and deal with everything they have to go through.”

“Uncle Jeff was just going to the park with his kids,” Josh said, explaining why Jeffrey was walking down the street with his children.

Josh, who lived in the same home with Jeffrey for several years and has watched him decline because of HD, recognized that his uncle’s symptoms have diminished his life.

“He’s not wheelchair-bound by any means, but the jerking is bad,” Josh said. “He’s not to the point where he’s bedridden. He can’t work. He can’t have a normal life by any means.”

However, Josh also asserted that having HD does not prevent Jeffrey from enjoying his family and exercising his rights as a parent.

Josh asserted that the police misunderstood the HD-caused jerky movement of the stroller as lack of concern for the children.

“Who would deny any person the right to their children regardless of how sick they are?” he said. The children represent the one thing that brings Jeffrey and Stup “joy in the world.”

As part of its report, WDTV showed footage of a surveillance video of Jeffrey walking down the street with his children moments before his arrest.

Josh posted the video on the Justice for Jeffrey Bane with a comment: “My uncle walking just prior to his arrest. Does this look like child abuse? He's simply walking to the store with his kids. You tell me if this warranted him being detained in the manner that he was.”

You can watch the video below.

Seeking to educate the police, society

Serious questions linger about this incident.

In particular, why did the officers simply not put Bane into a police vehicle immediately after handcuffing him? Why did they not respond to his pleas for help? Did the officers have crisis intervention training?

Westover Police Chief Ken Fike did not respond to my request for an interview to discuss the incident. Nor could I reach the Granville chief. I had hoped to raise awareness about HD. I will send both departments a copy of this article and tell them how to obtain HDSA’s above-mentioned Law Enforcement Training Guide.

Other HD advocates focused on the incident are also working on awareness efforts.

“We’ve got to spread awareness,” said Josh. “This is a disease that’s so unknown. People think it’s Parkinson’s. This is different. It completely disrupts the mind. If all that comes out of this is awareness for that, I’ll be happy.”

Be brave about your HD

Josh confirmed that Jeff did not tell the police he had HD. Nor was Jeff carrying the HDSA “I Have Huntington’s Disease” card.

“People with HD need to be brave enough to say ‘I have Huntington's disease,’” wrote Dr. Nance, who was recently invited to write a book chapter on HD in the criminal justice system. “It is up to the people around them, including law enforcement officers, to understand what that means.”

Dr. Nance also pointed out that HD-affected individuals can be extremely “impulsive,” sometimes causing the line between intent and symptom-driven behavior to become blurry.

“And some people with HD do get into drugs and alcohol, so just saying ‘don't hurt me, I've got HD’ may underestimate the danger of HD to self or others,” she observed.

Like Josh and Vetter, Dr. Nance concluded that people should channel their outrage about the Jeffrey Bane incident into proactive, public advocacy.

“Let us all use this opportunity, as citizens, or members of HD chapters, to speak to our local law enforcement – police, fire, emergency – about HD, and to provide them with the HDSA Law Enforcement Training Guide.”

The faceless faces of Huntington's disease

Huntington’s disease is an orphan disease with an estimated 30,000 patients and 250,000 individuals at risk for inheriting the genetic defect that causes the disorder. HD is largely unknown to the populace, or even within the medical community. When people do learn about HD, they are shocked by the way this genetic brain disorder robs its victims of their humanity, leaving them twitching nervously, emaciated, and unable to walk, talk, and eat. The result is a slow and ugly death.

For these and many other reasons, HD families face a terrible stigma.

As a pre-symptomatic, gene-positive individual who has just recently begun exiting the “HD closet” (click here to read more), I can attest to the great discrimination, ignorance, and denial that we regularly encounter. Still, I can’t reveal many of the stories, because of the risk of damaging people’s livelihoods.

We hide. We change our names. We cut ourselves off from family and friends.

We live in constant fear.

In the words of HD patient James Valvano, we are “the faceless faces of Huntington’s disease.”

Time for an HD coming-out ritual

The HD community must unite and speak with a common voice to the world: we will be heard, and we will no longer tolerate discrimination.

We will erase forever the stigma of Huntington’s disease. And, by joining hands with the millions of other brothers and sisters victimized by other neurological conditions, end their stigma, too.

As so many other disease communities have done, we must create a ritual for speaking out in public so that people can instantly identify with our plight, our cause for treatments and a cure, and our connection to the chain of social justice and human solidarity.

The Valvano family’s fight

James has thought hard about these issues.

In 2009, James’ 47-year-old brother John was diagnosed with HD after experiencing symptoms first thought to be Parkinson’s and/or the results of a stroke. Soon thereafter, James, who turns 40 this July, also tested positive for HD. He now had an explanation for his own health problems, which stretched back at least five years: shaking legs and occasional twitching in his right arm.

James Valvano (photo from his Facebook page)

“At the time I was not in the best of health and decided to change my eating habits and exercise, alongside a medication regimen,” James wrote me. “I lost upwards of 60 pounds and learned to focus my energy and meditate. I can no longer drive (my eyes flutter/move abnormally), and I sometimes have a hard time with my speech.

“I had to forfeit my small business (Marine Aquarium Shop), so I am home working on advocacy most of the day....

“Since I learned meditation techniques and decided to live more positively, I am able to function a bit less symptomatic….

“Just recently, my niece in Denver was diagnosed with HD (27) and my Dad (79) here in Saint Cloud (Florida). There are seven total (brothers and sisters) at risk. I am the second youngest of the seven, with thirteen nieces and nephews at risk.”

A film about the ‘monster’

James might have devised a successful formula for a neurological coming-out ritual.

As part of his growing advocacy, James decided to produce an allegorical film depicting HD symptoms and the fear felt by its victims. He titled it The Faceless Faces of Huntington’s Disease.

In the film’s captions. James calls Huntington’s disease a “monster” and a “living nightmare.” The main character wears a black, hooded robe and a silver, ominously expressionless mask. Afflicted by HD, this person lives a lonely life as symptoms intensify.

Police officers, also wearing masks, lock up the HD person in a small cubicle. The HD person then visits a cemetery.

“Without a cure, Huntington’s disease will win,” the film’s captioning continues. “We are not monsters.”

At the very end, James appears onscreen: “My name is James Valvano. I have Huntington’s disease. I am no longer a faceless face.”

You can watch the film below.




Scare tactics?

The Faceless Faces is not an easy film to watch. I believe it will especially shock people who have not heard of HD before or ever seen an HD patient.

In fact, the film has generated controversy among some members of the HD community. One viewer accused James of using “scare tactics.”

James addressed that criticism in a comment in an HD discussion group on Facebook.

“Let me say that I searched high and low prior to creating the film, for another interpretation similar to mine – to no avail,” James wrote in the February discussion. “Did I have another format? Yes. Why did I change the portrayal to its current state? I believed that HD needed to be exposed for exactly what it is – what I experience on a daily basis – what thousands experience (whether they have HD, [are] not yet sure, or if they are a caregiver).

“At the end of the film, it was key (in my expression) to ‘transform’ the ‘monster’ into human form – the person who lives with this horrific disease, the thousands of wonderful and loving people in our community who are not given the level of awareness which is so desperately needed.”

I contributed to the discussion with my own comment on the film:

“Someone once criticized me for saying HD was ‘dehumanizing.’ I did not apologize for my description, because it IS dehumanizing. The individual thought I was calling HD people unhuman. But it's not the people – it's the disease.

“And that is James' point. HD is a shocking disease. And unknown. So it's difficult to explain.

“I thought James packed in a lot of info into a very short time. Yes, many people will find it shocking. We need different approaches for different audiences. Some people find it difficult to look at HD people. I found it difficult to look at my own mom, because the disease had stolen her humanity and because I was looking at my own future.”

The Neuro Film Festival

The Faceless Faces has also created a stir in the community of neurologists.

James entered the film in the 2011 Neuro Film Festival, sponsored by the American Academy of Neurology Foundation. Among the more than 100 entries, it received the third highest number votes from the online viewing public. (A film about multiple sclerosis came in first, followed by one about arachnoid cysts.)

According to the festival’s website, the goal is to “help raise awareness through video about brain disorders and the need to support research into preventions, treatments and cures.”

The official first- and second-place winners of the competition, judged by a panel of academy members and film experts, will be announced at the festival in Honolulu on April 10.

‘I am No Longer Faceless’

To build awareness even further, James is preparing part two of the film, titled The Faces of Huntington’s Disease: I am No Longer a Faceless Face.

For this phase of the project, James is collecting short video clips of people taking off a mask and stating this sentence: “My name is (state name) and (I have Huntington’s disease) (someone I love has Huntington’s disease) (I am at risk for Huntington’s disease), etc., and I am no longer a faceless face.”

In a teaser clip for part two, James calls for everybody in the HD community tell his or her story: “You are special. You are a fighter. Our story must be told. Let’s put the stigma to rest. The mask is off. We are no longer faceless. It’s a new day for awareness. We will let the world know – together.”

James plans to travel across America to visit participants in the film. He also hopes to fly overseas

“I believe it is time for us to unite as a worldwide community and bring about a wave of awareness unlike any other!” James wrote on his website.

Combating discrimination

The task of ending the facelessness of Huntington’s disease is urgent. Despite the passage of the Genetic Information Nondiscrimination Act of 2008, people in the HD must still confront harsh discrimination and ignorance about the condition. (In a future article I plan to explore the enforcement of this act.)

HD people continue to land in jail because police officers think they are drunk or because of aggressive behavior caused by the disease.

Amanda K. Titus-Meadows of Marquette, MI, recently told me and others in an HD group on Facebook that her mother Teresa, a licensed practical nurse, was laid off from her job at a hospital late last year because she’d been diagnosed with early-stage Huntington’s. Amanda gave me permission to tell this story.

Suffering mainly from short-term memory loss, Teresa, 50, was nevertheless told “by both of her doctors, her neurologist, and her memory specialist that she is perfectly capable of still working. They were the ones who encouraged her to speak to a lawyer, because they believe that her rights have been violated and her employer is breaking the law.”

The doctors also pointed out that the hospital had asked for Teresa’s “medical records without a release.” Amanda added that Teresa’s boss filed disability and unemployment papers without Teresa’s consent.

The family has retained an attorney.

Sickening treatment

In the discussion, other HD-affected people revealed that co-workers harassed them or pushed them out of their jobs.

“I'm sickened that things like this happen to people,” Amanda wrote. “How upsetting that we be counted out just for carrying a disease. This should be handled with kid gloves and no different than a case with somebody who has diabetes, lupus, or any other disability.

“I hope that for the future of our potentially afflicted children that we are able to make the disease clear to those who don’t understand and protect them from suffering the same discrimination.”

I added my own feelings about this situation: “I am deeply saddened, disturbed, and angered.… NOW WE KNOW why so many people in the HD community are FACELESS! We've all got to fight for our rights! Many people have asked why I use a pseudonym on my blog. It's experiences like Amanda's mom's that have kept me anonymous for fear of losing my own job.”

Removing the mask (again)

To those in the HD community who would still hesitate to end their facelessness, James says: “If not now, when?”

After remaining anonymous for 15 years after my mother’s diagnosis with HD in 1995 (she died in 2006), I began to exit the HD closet last year.

On February 7 of this year I came out to some 250 prominent HD scientists and other attendees by giving the keynote address to “Super Bowl” of Huntington’s disease research, the 6th Annual HD Therapeutics Conference, held in Palm Springs, CA, and sponsored by the CHDI Foundation, Inc., the so-called “cure Huntington’s disease initiative.”

My speech was titled “Blog Entry No. 85 … Unmasking the World of Gene Veritas: An Activist Copes with the Threat of Huntington’s Disease.”

On March 31, I spoke about HD to the very first time to a trusted co-worker, although I’m still deeply fearful of potential discrimination if more colleagues find out.

Like tens of thousands of affected, gene-positive, and at-risk individuals, I’m in a race against time. We are all awaiting treatments for HD.

For me, the time to speak out is truly now. I will submit my own short video clip for inclusion in The Faces of Huntington’s Disease: I am No Longer a Faceless Face. Please watch below.

This video is my way of bidding farewell until my next article – and of asking everybody to help make HD, and other devastating neurological disorders, diseases with real faces.

Gene Veritas: No Longer a Faceless Face of Huntington's Disease from Gene Veritas on Vimeo.