We're proud and honoured to host a guest blog from Briana Banos. Briana is an independent film maker who released her extraordinary, moving and important documentary ‘Preventable: Protecting our largest organ’ earlier this year. The film charts her own journey with red skin syndrome/TSW, and follows her as she travels across the globe meeting fellow sufferers, doctors and experts in the field.

We stand with Briana and the RSS/TSW community in their fight to make life better for those with long-term skin conditions.

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 “The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly…”

Theodore Roosevelt

 

“My name is Briana, and my life was incredible.” 

My life truly was incredible… until I realized I was about to endure the most agonizing, and preventable, illness. 

I remember narrating that line while editing my documentary, Preventable: Protecting Our Largest Organ, an ode to the many lives touched by my iatrogenic condition, Red Skin Syndrome. I trekked the globe, alone, for 56 days, in hopes of uniting our stories and creating a platform for our voices to be heard. 

Red Skin Syndrome, has been a tense and contradicted diagnosis for decades in the dermatology community; some (if not many) professionals denying that it even exists. It is similar to eczema - if eczema were a mosquito bite and Red Skin Syndrome were a shark bite. I even had the gross opportunity to sit through a lecture given by the most pompous dermatologist, standing up at his high podium throne, announcing how he lied to patients about the very drug that created this condition.

Topical steroids, a standard treatment for almost every dermatological skin problem, have been a quick and easy prescription for doctors to write. They are a magical drug, but can come with a price. Eczema, specifically atopic dermatitis, is a chronic issue. These topical steroids, which come at different strengths, were never meant to be used as a continual band-aid for this type of condition – but have been since their inception. Patients, despite what all the inserts assert, can be placed on these drugs for months to years, way past the acceptable time frame.

Enough is enough.

I knew, watching again and again in the support groups how people were being cast aside as ‘one offs’, that something had to be done on a grander scale. This is how the documentary began – a simple idea that turned into what will most likely be the proudest piece of work I will have accomplished in my life.

It took two and a half years to gather the research, fundraise money, find participants, gain respect and trust from certain doctors, shoot the footage, and finally edit it all together before the documentary was complete. It was an extraordinary labor of love, simply for the fact that I sacrificed much of my own time to truly heal in order to help our cause. I was tired of being doubted and of feeling as if my story, like many others, would never matter. All my pain would just be in vain. That is unacceptable. The many I interviewed showed me how important it truly was to get this message out, even when I felt like I wasn’t the right person for the job at times.

I remember as I rolled my heavy video case down streets in one hand, tripods in the other, a cumbersome pack strapped to my weary back, I could only focus on what I considered to be failure. I was a “documentarian” I told myself, but who was I fooling? A mere pretender, an imposter struggling to fight against the odds of my illness while beating down the walls that created my illness in the first place. It all seemed impossible.

But here I am. And here we are, voices speaking out their truths.

Whatever it is you are going through, it is so vital to use your voice, even if it shakes. Our personal journey through life and the struggles we endure can be catalysts for change if we are willing to step into the arena and brave the world. It’s not easy. Nothing worth it usually is – but the risk is worth it all. The joy you feel knowing that you may have helped someone is incredible.

Red Skin Syndrome is a PREVENTABLE condition. I am still surviving. I deal with my skin everyday, and gently remind myself that healing takes time. No one has the same journey, and I do not wish for anyone else to feel robbed of life from a drug.

I will continue to spread awareness and do what I can for our community.

 

Resources: ITSAN.org, preventabledoc.com

 

Briana posts about Preventable on Instagram @preventable_doc