New Celluloid 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 hard disk drive thus thoroughly in addition to authentically that it should locomote required viewing for wellness aid professionals in addition to trainees inward the neurological field.

This 100-minute film, non yet released widely, is besides a must-see for the hard disk drive community in addition to the full general public, although it volition probable stimulate many to recoil from what it calls the “monster” tormenting HD-affected individuals in addition to their families.

As an hard disk drive cistron carrier in addition to long-time grassroots advocate who saw his woman nurture succumb to the disease, I consider myself a hardened observer.

Even so, Removing the Mask shocked me amongst its exploration of the lives of HD-affected individuals in addition to caregivers, including producer in addition to narrator James Torrington Valvano, diagnosed amongst hard disk drive inward 2009 yet nevertheless able to business office sufficiently to brand the film.

With an anthropologist’s eye, James probes the many layers of hard disk drive reality – in addition to the hearts of its victims.

Removing the Mask delves into the broad make of issues hard disk drive families face, including medical challenges in addition to social disruption.

The hard disk drive community volition recognize many of them, although they are rarely discussed thus openly inward a medium such every bit film: ignorance close the disease, misdiagnosis, denial, identify unit of measurement tensions, rage in addition to aggression, genetic testing, fiscal devastation, caregiving, in addition to loss of the affected individual’s independence, to mention merely a few.

Removing the Mask does non shy away from the most hard themes: inaccurate racial interpretations of hard disk drive past times physicians, associated sexual disorders, suicide, the exclusion from clinical trials of hard disk drive people amongst suicidal tendencies, in addition to mercy killing. It besides pays closed attending to juvenile HD, oft omitted inward the overall conversation close HD.

In striving for a comprehensive stance of HD, Removing the Mask adamantly advocates for a broad agreement of the illness past times medical in addition to psychiatric professionals, relevant authorities agencies, in addition to the public. This includes recognition of hard disk drive every bit non merely a motion disorder, but besides ane involving cognitive, emotional, in addition to behavioral difficulties.

Although Removing the Mask mirrors the detailed data close hard disk drive known to specialists, many non-specialist wellness professionals don’t empathise the disease.

Removing the Mask is non a textbook-like cinema but a genuine instance of the disease. Rather than a medical or scientific authorisation explaining hard disk drive for us, inward the cinema nosotros experience the hurting every bit the affected in addition to their loved ones tell us what it's actually similar to have got the disease.

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

You tin scout the Removing the Mask trailer inward the video below.

Shaving 7 hours a day

At James’s invitation, I lately watched the cinema past times myself inward a private online session on my habitation computer.

One of many poignant segments concerns John in addition to Sue Wright of Kent, England. John, who liked to locomote amongst computers earlier he fell ill, was diagnosed amongst hard disk drive inward 1992, in addition to shortly thereafter Sue became his caregiver. In the film, she describes his mental decline.

“He was waking every forenoon threatening to kill me in addition to throw me out the window,” Sue recalls. “He was sharpening knives inward the kitchen constantly, in addition to he was assaulting me. I e'er reported the assaults, for my ain safety, to the police, but never wanted him prosecuted. I knew it was the illness making him bear this way, in addition to non his intention.”

To avoid harm, Sue moved out, although she returned habitation upwards to 7 times each twenty-four threescore minutes menstruation to aid for John.

John developed a status experienced past times a number of HD-affected individuals: obsessive-compulsive disorder (OCD).

“He was obsessed amongst whatever newspaper towels, tissues, etc.,” Sue remembers. “He would pile them upwards in addition to locomote on them. If I attempted to throw them away, he would retrieve them from the rubbish bin in addition to position them dorsum inward their piles.

“He was besides obsessed that whatever facial pilus would suffocate him. So he started shaving for upwards to 7 hours a day, making his human face upwards cherry-red raw.”

Starving himself to death

Sue had to have got John legally committed to a mental wellness facility.

“This was a horrific experience, every bit the constabulary were brought into the solid inward riot gear, in addition to he was dragged out of the solid nevertheless trying to consume his lunch,” she explains. “My twin Sheila was wonderful. She stepped into the solid when [it] happened thus that John would blame her rather than me for what happened. This gave her nightmares for quite a considerable menstruation but thankfully did save John’s in addition to my relationship.”

Over the side past times side several years, John lost his mightiness to walk in addition to speak. Eating besides became extremely difficult. When asked if he wanted a feeding tube, Sue says inward the film, John violently shook his caput no.

“John indicated that he’d had plenty when he started refusing to consume in addition to drink,” she says. “His lineament of life was non-existent, in addition to I knew he wanted it to last over.”

Mercy killing is illegal inward the United Kingdom. “My solely option was to aid him every bit he starved himself to death,” Sue says plaintively.

John died inward 2006. He was 56.

‘We have got a face’

At the film’s outset, James declares that the hard disk drive monster “caused thus many people across the globe to enshroud behind masks, masks of silence.[…] It was fourth dimension to destroy the monster. Our finish was really simple: to take away the mask of Huntington’s disease.”

He adds: “It was fourth dimension to present the globe that nosotros have got a face.”

A old mental wellness aid professional person in addition to small-scale work organisation possessor forced to quit afterward his diagnosis, James began locomote on the cinema inward 2011, amongst a powerful curt showing people taking off masks in addition to proverb “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, in addition to psychology at St. John’s University inward Jamaica, NY, for a piece inward the early on 1990s.

James decided a cinema was the best agency to exit the give-and-take close the disease.

“It frustrated me in addition to thus many people that no ane was telling or showing the existent truth behind he disease,” he said. “Advocacy is to a greater extent than than walking, fundraising, wine-tasting, in addition to dinners. All of those ways to advocate are important, but they solitary were non working. How tin nosotros aspect the globe to know close hard disk drive if nosotros are non willing to larn exterior the box?”

In improver to his locomote every bit an advocate, James cares at habitation for his older blood brother John, directly inward the advanced stages of HD, amongst the assistance of his spouse, Ian V. Torrington. James’s manly someone nurture died of hard disk drive in addition to cancer. Five other siblings in addition to numerous other relatives are at peril for HD. Ian besides cares for James.

Ian V. Torrington (left) in addition to James Torrington Valvano (personal photo)

To back upwards the projection but besides to network globally to enhance the profile of HD, James in addition to other advocates from hard disk drive families formed WeHaveAFace.org.

Recently granted nonprofit status, the organisation provides online in addition to mobile back upwards to the hard disk drive community. Activities include fundraising for hard disk drive query in addition to identify unit of measurement assistance, online back upwards groups, the production of a quick reference guide close hard disk drive for constabulary in addition to rescue workers, in addition to a mobile application amongst ample data close HD.

A number of WeHaveAFace.org’s U.S-based regional advocates tell of their struggles amongst hard disk drive inward Removing the Mask.

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

‘We demand the globe to watch’

According to my conversations amongst James via Facebook, he in addition to his cinema squad held “dozens upon dozens” of Skype calls in addition to exchanged thousands of e-mails inward the background query for the Removing the Mask.

Not everybody agreed amongst James’ straight approach. According to him, ane advocate broke off from the projection “because I was tackling suicide.”

James himself admitted experiencing powerful emotions during the project.

“Filming the topic of suicide was ane of the most hard in addition to painful experiences inward my life,” he wrote inward a digital mag kept during the production. “As a filmmaker yous desire to larn the rawness of the topic, but every bit a someone amongst Huntington's disease, my pump in addition to soul ached through every second.”

In the cinema Cindy Dupree, an HD-stricken adult woman from Alva, Oklahoma, in addition to her hubby Ron speak hauntingly close suicide.

“I am non ashamed or afraid to utter openly close suicide, because it affects thus many people inside the Huntington’s community,” says Cindy.

“I know that she battles thoughts of suicide each day, in addition to I fright that I volition have that telephone phone that ‘your married adult woman has merely taken her life,’” says Ron. “I tin solely imagine how other caregivers feel. I know they are fighting the same battles nosotros are. I am angry a lot of the fourth dimension in addition to exercise my best to realize in addition to empathise that it is the illness in addition to non my wife.”

Cindy says that knowing Ron in addition to their 3 daughters rely on her keeps her “grounded.”

“The documentary was never created for the Huntington's community,” James added. “We had to larn exterior the box in addition to laid our aim on the full general public. Although I believe in addition to promise that the cinema volition resonate inside our ain community, nosotros demand the globe to scout just what nosotros locomote through.”

How to encounter the film

WeHaveAFace.org celebrated the official launching of Removing the Mask on June 20 inward James’s hometown of St. Cloud, FL. He has entered it inward close a dozen cinema festivals inward the U.S.A. in addition to abroad.

It won inward the category of best characteristic documentary inward the July 2015 monthly contest of the Miami Independent Film Festival.

James hopes to brand the cinema available to the full general populace inward early on 2016 via DVD, Blu-ray, in addition to Vimeo.com. He is besides hoping to include it on Netflix in addition to iTunes.

For now, organizations in addition to back upwards groups interested inward showing the cinema every bit part of an hard disk drive awareness-building or fundraising lawsuit tin exercise thus past times registering at this link.

The dilemma of illness

The Huntington’s Disease Project: Removing the Mask joins a grouping of high-quality documentaries close hard disk drive launched inward recent years, including The Lion’s Mouth Opens, a courageous HBO cinema close filmmaker-actress Marianna Palka’s determination to exam for the genetic defect.

With its unapologetic presentation of HD, Removing the Mask volition stir contention non merely close Huntington’s, but besides the agency inward which people in addition to institutions bargain amongst the terrible challenges of neurological disorders inward general.

After watching the film, I kept remembering the dilemma I faced vi years agone when I was directing the structure 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 purpose positive, “feel good” images to advance our cause? Or should it present the harsh realities of HD? One of my immature human board members, a populace relations specialist non from an hard disk drive family, cringed when I showed him merely about of the photos of gaunt HD-affected individuals I was proposing for the site. I indeed used merely about of those photos on the site (which is no longer operative).

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

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

I believe that it can last inward the wellness aid community. Removing the Mask would brand a fine multimedia companion to HDSA’s A Physician’s Guide to the Management of Huntington’s Disease.

Professionals in addition to students inward the medical professions must encounter this film. So must populace officials similar the administrators at the Social Security Administration in addition to doctors who evaluate HD-affected individuals for disability. And thus must full general medical practitioners, neurologists, psychiatrists, in addition to others who potentially come upwards into contact amongst hard disk drive patients.

I’m hoping that the Miami festival respect indicates that the full general populace is besides fix to aid destroy the monster of HD.

(Note: I have got a really small-scale part inward the film, where I accept off my ain mask, but otherwise had null to exercise amongst the content.)

Share this post