Rare Disease Focus of Documentary


Filmmakers Michaela O’Brien & Melissa Langer examine EB in Bogota, Colombia

Michaela shootingWhile working as a documentary photographer in 2011, Michaela O’Brien visited an orphanage in Bogota, Colombia. While there, the 2004 Wakefield High School graduate met two girls, Nixa and her older sister Nury. Both girls were afflicted with a rare, genetic skin disease called Epidermolysis Bullosa, or “EB.”

O’Brien watched as the sisters wrapped their limbs in plastic to minimize damage to their raw and fragile skin. She saw the girls draw stares when out in public.

Nury and Nixa 2Inspired by these feisty and resilient sisters determined to be independent, O’Brien began an impromptu film shoot and upon her return to Boston shared the footage with film editor Melissa Langer. Convinced of the power of the story, the film makers made three more return trips to Colombia where they documented their discovery of a wider EB community.

Their documentary film, In Crystal Skin, focuses of four individuals with EB and their separate but interwoven stories of struggle in the face of great odds.

Michaela O’Brien is a documentary filmmaker and photographer from Boston, MA. She is currently directing and producing In Crystal Skin while employed at Northern Light Productions, a premiere non-fiction and documentary media outlet in Boston, where she has worked for the past five years.

Melissa, boom pole in hand. One great audio engineer!Melissa Langer is a documentary filmmaker from Washington, D.C. She is currently producing and editing In Crystal Skin while pursuing an MFA in Documentary Film from
Stanford University. For the past several years Melissa has lived in Boston, where she worked for independent non-fiction production houses making media for permanent museum
installations around the country.

EB in a condition that makes the skin so fragile that even the gentlest contact causes blistering, open wounds and sores. There is a wide range of severity within the 30 known variants of EB. In its mildest form, blistering is limited to the hands and feet. With good wound care, many EB sufferers lead fulfilling and reasonably unrestricted lives.

Nixa types on a laptop. She and her sister wrap their entire bodies in plastic to protect their skin from further damage.But for many living with the condition, the blistering affects not just the skin but the inner body linings like the mouth and the esophagus. For those sufferers, the eating of solid foods becomes next to impossible.

In its most severe forms, EB can cause extensive blistering all over the body, blistering of oral tracts and membranes of internal organs, narrowing of the esophagus, contraction of joints, and complications leading to death. Babies born with the most severe form of EB often don’t survive past age two.

After three years of shooting, research and planning, O’Brien and Langer are in the process of trying to raise the necessary funds to complete the final editing of the film. They have embarked on an Indiegogo campaign in hopes of raising $25,000 to complete post-production work including editing, audio mixing and a musical score. Indiegogo is a web-based form of “crowd funding” used by artists, inventors and activists to generate revenue to finance their projects.

Interviewing Miguel“Creating ‘In Crystal Skin’ has been an act of dedication and perseverance,” O’Brien says. “What inspired us to create this film in the first place – the voices and stories of those living with a rare disease – is what drives us to complete a documentary which will reach a wide audience.

“We are turning to Indiegogo firstly to raise money to complete a film which deserves to be shared,” O’Brien explains, “but also to establish a relationship with the many individuals experiencing life with a rare disease and those involved with patient advocacy, EB & rare disease research.”

EB affects one in every 50,000 live births. Current estimates place the number of EB patients in the United States at between 25,000 and 50,000. But while “In Crystal Skin” focuses on EB, the goal of the film is to also highlight the plight of those struggling with rare diseases of all kinds.

According to the filmmakers, there are 7,000 known rare diseases with more being discovered every day. Some 30 million people in the United States – 10 percent of the population – are living with a rare disease. Fifty percent of those suffering from rare diseases are children. Thirty percent of children with rare diseases do not live to celebrate their 5th birthday. Some of those diseases are deemed so rare that it is not considered financially feasible to even look for a cure.

Maria Alejandra gets tralison, a Chilean EB Doeatment from Dr. PalisonAs difficult as it is for rare disease patients under the modern and sophisticated US health care system, imagine what it’s like in poorer countries. O’Brien and Langer wanted to tell that part of the story.

“I wanted to show the difficulties of living with a rare disease which are compounded when you are living in a third-world country,” O’Brien said. Those caring for EB patients in Colombia, she noted, are strapped for resources and products to care for their patients.

“There is also an issue of general rare disease awareness and knowledge in Colombia, as well as many other countries,” O’Brien said. “For example, a medical professional in Colombia explained to us that they only have 43 registered EB patients, and they estimated that given the population of the country there are about 90% of the EB patients left to be diagnosed and treated.”

Shooting in Colombia also presented some challenges for the film makers.

Michaela shooting Maria Alejandra watching tv in her parents' room.“Filming in a foreign country is difficult, but especially difficult when you are only a two person crew,” O’Brien observes. “Melissa and I have undertaken all production roles, including field production positions such as cinematographer, sound engineer, grip, and gaffer. We lived with our characters for weeks on end in order to capture the true essence of their daily lives, so filming was oftentimes on-the-go. In this vein, we experienced the true hustle and grind of life in Colombia, resulting in a very raw yet patient visual aesthetic.”

Weaving together interviews with patients, medical experts and advocates, In Crystal Skin paints a moving picture of the daily routines facing those managing daily life with one of the world’s 7,000 known rare diseases.

If you would like to make a donation to help Wakefield native Michaela O’Brien and her co-filmmaker Melissa Langer complete their documentary, In Crystal Skin, you can donate online here.

Watch a preview of In Crystal Skin.

View more photos

[This story originally appeared in the June 17, 2014 Wakefield Daily Item.]

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