Rare Disease Report

A Conversation With Director of 'In Crystal Skin' - A Documentary About Epidermolysis Bullosa

JUNE 06, 2014
James Radke

Epidermolysis bullosa (EB) is a group of rare genetic rare disorders that manifest as blistering or erosion of the skin. There are several types of EB and in the more severe forms of the disease, blistering can lead to deformities including fusion of the fingers and toes, secondary skin infections, sepsis and even death.  The deformities, constant pain, and rarity of the condition can make the disease a very isolating one. 

One person hoping to share the strength, isolation, and hardship these individuals have to go through is Michaela O’Brien –  the director and producer of the documentary film In Crystal Skin.  Below is an interview we had with Ms O’Brien, who is currently involved in a Crowdfunding initiative to raise the funds needed to complete her documentary about 4 persons with EB.

What is In Crystal Skin about?

In Crystal Skin is a documentary that follows four individuals from Bogotá, Colombia living with Epidermolysis Bullosa, a skin disease so rare that it is not commercially viable to develop a cure. We are a team of young filmmakers intent on sharing their stories of struggle and courage.

We have made four trips to Bogotá, Colombia to follow our characters: two sisters who live in an orphanage but dream of independence, a ten-year-old girl crossing the threshold of a complicated adolescence, and a middle-aged man searching for a companion in a bustling city. Last year, we completed the final shoot in Bogotá and have been busy with post-production in Boston while maintaining our day jobs. In Crystal Skin has truly been a labor of love. We are now at a crucial stage and we need your help to finish this documentary.

We need to raise $25,000 to cover the costs of post-production, which includes editing and other important finishing processes like color correction and sound mixing.

Since we began this project, we have cultivated a strong community of supporters for the film. We have had some local fundraising success, but now we are turning to you for contributions that will help us to finish the film. With your support, In Crystal Skin will serve as both an outlet and an inspiration for those who struggle with EB and other rare diseases. 

What was your inspiration for doing the film?  

I first visited a Colombian orphanage in 2011 as a documentary photographer. It was here where I met Nixa and her older sister Nury, both of whom were born with EB and continue to struggle with this disease. The sisters wrap their limbs in plastic to minimize damage to their raw and fragile skin. Life with EB has proved isolating; the sisters draw stares on the streets of Bogotá, whether on their way to a medical appointment, or just out for a walk. Despite their challenges, the sisters are a feisty, resilient pair who fervently yearn for independence.

Inspired, I began an impromptu shoot, and upon her return to the U.S., shared the footage with editor Melissa Langer. Convinced of the story’s power, the two of us embarked on the first of four return trips to Bogotá, scraped together with personal funds and vacation time. Over the course of the next three years, we uncovered a larger EB community, colored by different people and perspectives, yet united by a common struggle and setting. In Crystal Skin reflects this process of organic discovery, following four characters along their individual yet interwoven paths which combine in a universally resonant story of courage in the face of great odds.

Why are additional funds needed?

We have spent three years filming, researching, and planning. Now, in the final phase, we are determined to create a high-quality finished product which honors the personal and moving stories of the film's subjects and the lives of individuals around the globe living with EB. We are at a sink-or-swim point in the process, and together your donations will make all the difference.
Raising our goal of $25,000 will go a long way towards finishing In Crystal Skin. Post-production costs - personnel and equipment for editing, color correction, audio mixing, and music score - are essential to ensuring the film looks and sounds its absolute best. Less expensive, but no less important are finishing touches like subtitling, graphics, and title design.
Here’s the breakdown of how the funds will be spent:

In the event that we exceed our fundraising goal, these extra funds will be allocated to outreach and distribution to ensure that this film reaches as many people as possible. Funds will be used for festival submission fees and publicity materials. Outreach and publicity are expensive, and sometimes marketing fees can prevent a great film from reaching a wider audience. Help us make sure that In Crystal Skin makes a difference!

We want to have In Crystal Skin ready to submit to film festivals by spring 2015. To make that happen, here’s our plan of action for the coming year:
July-September 2014 - Rough Cut
October-December 2014 - Fine Cut
January-March 2015 - Picture Lock & Music Score
April-June 2015 - Online (including Color Correction & Sound Mix) 

It is important to stress that every dollar raised in this campaign will go toward the finishing costs of In Crystal Skin. This film has been a labor of love for years, and our dedication will continue!

What will backers of the film receive in return?

We are touched and humbled by the idea that people will reach out to support this film, and we have lined up some amazing perks across all levels, ranging from social media shout-outs and postcards to unique works of music, art and jewelry. We have a beautiful selection of production stills and original photography by filmmaker Michaela O'Brien, in addition to digital downloads of In Crystal Skin and O’Brien’s first film, documentary short Far From C3. One of our most personal perks is a face-to-face filmmaker Q&A and personal chat - via Google hangout - with Michaela and Melissa. 

Sebastian Cruz and the Cheap Landscape Trio
 have offered a digital download of their Afro-Colombian self-titled album for all donors at the $100 tier, and 50 downloads of Gregorio Uribe’s album Pluma y Vino  featuring the soulful sounds of Colombia are available at the $250 tier.

At the $2,500 level, we have four beautiful, one-of-a-kind blown glass bowls from the artist Chris Laughman, and at $5,000 we have two original watercolors painted by Colombian artist Juan Eduardo Gomez

By far our most exciting perks are at the $10,000 level: be our special guest at the premiere of In Crystal Skin, and enjoy a special sponsorship page in the film’s credits, featuring your name or company name, in addition to many perks from lower tiers. 

To learn more about this film and how you can help, visit

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