Sisters to Share Their Battle with Cystic Fibrosis at JANM

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Anabel Stenzel, left, and Isabel Stenzel Byrnes celebrate their transplanted lungs and honor their donors with activities such as playing bagpipes, competing in swimming races or simply blowing a few soap bubbles. (Photos courtesy Anabel Stenzel)

Isabel Stenzel Byrnes struggled with the conversation on the phone on Tuesday night, doing her best to hear over the drone of her bagpipe group as they prepared for a rehearsal.

“We’re going to be in a Fourth of July parade,” she shouted while speaking with the Rafu. “I’m not sure if you can hear me, but we’re really excited.”

Stenzel Byrnes and her twin sister, Anabel Stenzel, are perpetually grateful to fill their lungs with air and let it out, to make music on the pipes, compete in swimming races or simply to blow a few soap bubbles. They feel fortunate because their lungs were donated.

The sisters, whose mother is Japanese, will be on hand to answer questions after a screening of their documentary “The Power of Two,” which chronicles their lives and how they struggled to overcome cystic fibrosis.

This special public program will begin at 1 p.m. on Saturday, in the Tateuchi Democracy Forum of the Japanese American National Museum, located at 369 E. First St. in Little Tokyo.  The film will be presented with Japanese subtitles.

“We hope the message of this film, and of what we’re working for, is to cherish health,” Anabel Stenzel told the Rafu Wednesday. “It’s not just those involved with organ donation and transplants, but it’s the power of a community that helps people overcome all kinds of challenges.”

When Isabel and Anabel were born to Reiner Stenzel and Hatsuko Arima, they were almost immediately diagnosed with cystic fibrosis, a genetic disease that causes abnormal transport of salt and water in the lungs, digestive tract and sweat glands. As a result, the lungs fill up with mucus, which affects breathing and pancreatic functions. The prognosis in 1972 was for the girls to live less than 10 years.

Growing up in Pacific Palisades, the twins’ lives revolved around treatment, therapy and long stays in the hospital while trying to stay in school. Home therapy involved someone smacking the sisters in their backs to help them cough up excess mucus in their lungs. Despite these challenges, the girls were able to live in Japan, visit their grandparents in Germany and attend Cystic Fibrosis Summer Camp with other young people. Yet their condition remained the center of their lives.

Isabel and Anabel take a swim off a beach in Okinawa, Japan.

Anabel once wrote, “I am really scared sometimes when I can’t stop coughing or breathe. When my breathing becomes so labored I get so sick of it. I feel like just yelling STOP! and relaxing my lungs for once. I sometimes wonder what life without coughing, doing therapy, or taking medications would be like. I wish I could take my new bike and just ride away from it all and have just one day without a cough, weakness or the thought of dying.”

While the sisters beat the odds and enrolled at Stanford University, they suffered as their friends with CF passed away. They also struggled with the reality that while they were twins, their conditions were different, as were their personalities and social development. Their love and loyalty for each other was strained by sibling rivalry and the natural desire for individuality.

“As we attained physical maturity, Ana and I found the curtain rising to reveal a new stage: sexuality,” Isa wrote. “I remained painfully self-conscious and shy about my newfound sexuality, but Ana reveled in her emerging curiosity. She professed an expertise about sexuality despite her naiveté and inexperience. Like me, she had yet to find a real boyfriend.”

Ultimately, both sisters faced the hard reality that their lungs would fail them at some point. Their last resort was lung transplantation. But, as one of their doctors warned, “With lung transplantation, you’re trading one disease for another. Lung transplantation is not life-saving, it is life-prolonging. There are no guarantees. You will be immuno-suppressed for the rest of your life.”

The sisters originally put much of their experiences in a 2007 book they co-authored, “The Power of Two: A Twin Triumph over Cystic Fibrosis,”  and now in the documentary with the same name.

The film, produced and directed by Academy Award-nominated producer Marc Smolowitz, has garnered many awards from film festivals around the country. One observation the sisters make is that they were lucky to have been born in the U.S. and not Japan, where treatment for CF and organ transplantation are not as advanced.

It wasn’t until 2010 that governmental policies were supportive of organ donations. Culture, superstition and social stigma kept the issue taboo for generations.

Earlier this month, for the first time in Japan’s history, doctors were allowed to declare a child under six years old brain dead, paving the way for the family to make his organs available to other children in desperate need.

“It’s a huge step,” Isabel said Tuesday. “But it’s a tragedy that some kids have died over the last year or so while they waited for organs. We hope this serves as a model for the future.”

Anabel added, “We’re watching this closely. The statistics are slightly better each year, but we’re hopeful.”

Admission to this Saturday’s screening and discussion is free, but reservations are encouraged by calling JANM at (213) 625-0414. For information on the film, visit www.thepoweroftwomovie.com.

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