Catching Up with Bernadette Scarduzio Years After Her Documentary Film

Catching Up with Bernadette Scarduzio Years After Her Documentary Film

The 2013 documentary film “Bernadette” was a milestone for Bernadette Scarduzio in many ways. It wasn’t just the first movie project she was a part of, it also was a coming out for her. The documentary marked the first time she came out as gay and her first time sharing with the world her story as a woman affected by Charcot-Marie-Tooth disease (CMT). Now, she’s recognized as an icon and advocate in the CMT community.

After watching “Bernadette” several days ago, I reached out to her. I wanted to hear how life has changed for her in the decade since the filming of “Bernadette” and what it’s been like to be a public figure with CMT.

Any doubts that the documentary accurately captured her personality were erased within a few minutes of chatting with her.

“Bernadette” certainly captures Scarduzio’s self-admitted brash and edgy flair. She can be blunt, doesn’t hesitate to curse, and has an earnest laugh. But while her personality and her passion may not have changed since the documentary’s initial release, Scarduzio said many other aspects of her life have.

Bernadette Scarduzio. (Photo by David Needleman)

For one, she’s quit smoking cigarettes and she’s no longer with the woman she was dating while filming was in progress. Furthermore, her CMT symptoms have advanced. She relies on caregivers these days and drives an adaptive car.

However, the passion that drove the telling of her CMT story has stayed the same. It’s a passion she said she fostered from a young age after years of school kids making fun of the way she walked. According to her, she’s only become more inspired since her father passed during the filming of “Bernadette.”

“My family didn’t really talk about it, but I wanted to talk about it,” Scarduzio said. “I wanted people to know what CMT is. And I was ready. I had spent my whole life limping and on crutches and on casts and I was over it. I was over caring about what people thought of me.”

The film crew shooting in Lourdes, France. (Courtesy of Cinema Libre Studio)

As a teenager, she dreamed of speaking about CMT on “The Oprah Winfrey Show.” While that never happened, folks around the world still found her story through “Bernadette.”

“I made a commitment to be a face of CMT and [“Bernadette” director] Josh Taub gave me the wings for it, and now I felt like I’ve got to do something,” Scarduzio said. “And I want to keep on making my dad proud. And I want to continue reaching out to people who have CMT.”

Folks around the world have been responding. Especially since Amazon Prime Video streamed “Bernadette,” people have been emailing Scarduzio to share their own stories and some have made a pilgrimage to visit her in person.

Nowadays, Scarduzio occupies her time by advocating for the disabilities community in other ways beyond the scope of her documentary film. For the past five years, she’s been working for the Hereditary Neuropathy Foundation as a social media coordinator. And she is pushing for beach cities to adopt Mobi-mats to improve access for everyone as well as applying for acting roles to try to increase the visibility of the disabled community in the media.

“I feel the need to keep on sharing my story,” Scarduzio said. “And I will continue until the day my heart stops beating because people need to know what CMT is and that it affects so many people out there.”


Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.

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  1. TERRY L GRANT says:

    Sometimes when dealing with the reality of my own CMT it’s easy to develop a feeling of – why me? – but it just takes a few minutes of reading some of the stories posted on the CMT Cafe or CMT News to make me feel blessed.

  2. Linda Westmoreland says:

    Thank you Bernadette for reaching out to my son Jon. Unfortunately, his mental disease causes him to be very shy. It was very nice of you to offer your help and I will always appreciate that effort.
    I watched and loved your documentary. When will part Two be coming?
    ❤️ Linda

  3. Kaitlin Elaine LaManna says:

    My name is Kaitlin. I don’t have CMT but I do have a severe form of Erb’s Palsy, a physical disability that limits sensation and movement in my right arm (shoulder, hand, and fingers included). I feel like I need to meet Bernadette. My father is still living; he is 73 and a Vietnam Veteran. He is not in good health. My mother died from cancer of the stomach 7 years ago, when I was 19 years old. My relationship with my mother is a guiding force in my life, much like Bernadette describes. I just feel like it is DESTINY that I meet her. We look freakishly alike as well. My whole body was trembling as I was watching this film. I don’t have much support from family–Bernadette has been lucky in that aspect. I’ve always wanted to be a ballerina. And, my dream is to dance like the Black Swan in ‘Swan Lake’ one day… And raise BOTH arms high above my head, and let them fall with grace into another wave length…and to feel the symmetry…so i can design a prototype of angel wings that would allow ANYONE to fly.

  4. Giselle Szpicek says:

    I just watched your film this afternoon. I heard about it from the Facebook CMT site. I was diagnosed with type 2 in 2017. I have had systemic lupus for 28 years, was diagnosed with that at 24 and now CMT. I didn’t know what CMT was until diagnosis. It’s not easy and I appreciate your honesty and increasing awareness. I cried a lot during your film. I had not cried since diagnosis because I figured I had cried enough at my systemic lupus diagnosis and after my husband’s diagnosis and my father’s dementia. I have to care for my dad too. It’s a bit to contend with and your film released so much emotion that needed to be released. Thank you. I hope you have more good days than bad days.

  5. debbie niemeyer says:

    Wonderful doc, I’m watching it on Prime right now. I’m hope you Bernadette are doing better and just hanging in there.

  6. Bill Hemp says:

    I’m 76 . Was diagnosed with blood test in 2014 that confirmed I have CMT . Have been told many times since my 30s that I had it , by Podiatrists . Never affected me for work except I have very arches , hammer toes , and very weak ankles . Began wearing Orthotic shoes in 1994 . Helped immensely to walk . Expensive but worth it .
    Took early retirement age 64 because my right leg would go numb ! Progression of worsening rapidly in 2015 , I am a paraplegic . Have the most severe case of CMT .
    CMT is not an end of life situation . I live in an Assisted Living facility , and accept my situation .
    Had a great marriage , three wonderful sons . My youngest shows signs of CMT , the other no .

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