Hapa twins Anabel Stenzel and Isabel Stenzel Brynes appear in documentary "The Power of Two," a film that raises awareness about organ donation.
Twin sisters Anabel Stenzel and Isabel Stenzel Byrnes say they likely would not have been alive today at 39 if they had been born in their mother’s home country of Japan.
Born in Los Angeles, Calif. to a Japanese mother and German father, the twins were diagnosed with cystic fibrosis, or CF, a fatal disease that affects the lungs and digestive tract.
The sisters were in and out of the hospital in the United States throughout their lives, undergoing treatments and eventually double-lung transplants.
“It was very disheartening to see that if we were born in Japan we would die very soon and how unfair it is that just because we happen to be born an ocean away that we could live to 39,” said Anabel Stenzel. “Whereas the kids in Japan they struggle just lacking something as basic as pancreatic supplementation enzyme, which is one of the basic treatments for CF.”
Overseas in Japan, where CF is rare, organ transplantation went against cultural beliefs. Adding to the controversy was a failed heart transplant surgery that resulted in murder charges brought against the surgeon.
But luckily, Anabel Stenzel said, organ transplantation legislation and CF healthcare in the country is improving.
In 2009 a bill known as Plan A was passed, revising Japan’s transplant law and eliminating the need for a written will prior to organ donation. The law also clarified brain death as legal death.
“So prior to July 2009 many doctors were afraid of recovering organs because they were afraid of being prosecuted for murder if they took out organs from somebody because there’s no legal definition of brain death as death,” Isabel Stenzel Byrnes explained.
About four decades earlier a surgeon named Juro Wada performed a heart transplant on an 18-year-old. The organ donor recipient died months later and Wada was charged with his death. He was also accused of misdiagnosing the organ donor as brain dead. Wada was later acquitted, but the surgery left its influence on organ transplant surgery.
To raise awareness about organ donations in Japan and the U.S., the twins are featured in a new documentary “The Power of Two.” The film, which was inspired by their 2007 memoir of the same name, will be screened through Aug. 25 at the Laemmle Sunset 5 in Los Angeles, Calif.
Other screenings nationwide are scheduled throughout the year, with a possible showing in Japan as well. The filmmaker says “The Power of Two” book provides a sense of inspiration and appeal to a broad audience.
“As a filmmaker I’ve always been drawn to people who have those life changing epiphanies and go on unexpected life paths,” said Marc Smolowitz, director and producer. “And then I met Anna and Isa and that sealed the deal. I completely fell in love with them, we had a great connection and we decided that we wanted to jointly pursue this.”
To make the film, which had a budget of about $600,000, the crew traveled to two different countries and 27 cities, said Smolowitz.
While filming the documentary in Japan, the twins spoke publicly about their story, hoping to dispel myths about organ donations.
“It’s not about death, it’s about life and giving people like us life, being remembered as a hero,” said Isabel Stenzel Byrnes. “In Japan there’s a lot of shame about illness, like in many Asian cultures. When you’re sick or you’re different, it’s best to be private about it and not open up.”
Growing up with CF, the twins became regular fixtures at the hospital.
“I think for us having a twin really helped normalize it. It wasn’t way strange because my sister was doing it too,” Anna Stenzel said. “The hospital became a very familiar place.”
Spending their formative years in the hospital as a result of having CF also gave them a clear understanding of their own mortality when other children in the next room died.
As twins, who are half Japanese, having CF is extremely rare.
CF occurs most commonly among Caucasians of Northern European descent, according to the American Lung Association’s 2010 State of Lung Disease in Diverse Communities.
A 2010 study by the Centers for Disease Control and Prevention shows 1 in 31,000 to more than 1 in 100,00 APAs are affected by cystic fibrosis. There were about 16 APA deaths from 1999 to 2006.
“I would say that my dad, in our book we kind of talk about this, my dad is a physicist and he loves numbers,” Isabel Stenzel Brynes about her father Reiner. “And he calculated that being twins of cystic fibrosis was a chance of one in 1.8 billion, based on the numbers he had back in the day.”
Anna Stenzel had a double-lung transplant in 2000 and another in 2007 because her body rejected the first. Isabel Stenzel Brynes had her double-lung transplant in 2004.
On camera the sisters removed their shirts and bared their transplant scars that run horizontal across their chests. The scars are reminders of all they have overcome in their lives.
“I just want to mention the scar is something that I feel very proud of,” Isa Stenzel Brynes explained. “You could call it — in a cliché way — you can call it a badge of courage that got me through the most difficult transition in my life.”
When the sister duo got their new donor lungs, they ran a half marathon, traveled to three continents and climbed a 10,000-foot-tall mountain. Isa Stenzel Brynes also enjoys playing the bagpipe.
On Aug. 19 they traveled to Los Angeles from their homes in Northern California to watch the movie “The Power of Two” on the big screen for the first time in a public venue.
The Hapa twins say they hope the documentary “The Power of Two” will inspire others to give the gift of life like their donors and donor families did.
Over 100,000 people are in need of organ transplants, according to Donate Life America, a non-profit dedicated to increasing organ and tissue donation. Some 18 people a day are estimated to die because of a lack of available donors.
“We represent an incredible transformation that can occur from illness, where people really grab on to life,” Anna Stenzel said. “They really enjoy it, fight for it, love it, live it up and cherish every breath. If it can inspire other people to cherish their health that would make me really happy.”
Born in Los Angeles, Calif. to a Japanese mother and German father, the twins were diagnosed with cystic fibrosis, or CF, a fatal disease that affects the lungs and digestive tract.
The sisters were in and out of the hospital in the United States throughout their lives, undergoing treatments and eventually double-lung transplants.
“It was very disheartening to see that if we were born in Japan we would die very soon and how unfair it is that just because we happen to be born an ocean away that we could live to 39,” said Anabel Stenzel. “Whereas the kids in Japan they struggle just lacking something as basic as pancreatic supplementation enzyme, which is one of the basic treatments for CF.”
Overseas in Japan, where CF is rare, organ transplantation went against cultural beliefs. Adding to the controversy was a failed heart transplant surgery that resulted in murder charges brought against the surgeon.
But luckily, Anabel Stenzel said, organ transplantation legislation and CF healthcare in the country is improving.
In 2009 a bill known as Plan A was passed, revising Japan’s transplant law and eliminating the need for a written will prior to organ donation. The law also clarified brain death as legal death.
“So prior to July 2009 many doctors were afraid of recovering organs because they were afraid of being prosecuted for murder if they took out organs from somebody because there’s no legal definition of brain death as death,” Isabel Stenzel Byrnes explained.
About four decades earlier a surgeon named Juro Wada performed a heart transplant on an 18-year-old. The organ donor recipient died months later and Wada was charged with his death. He was also accused of misdiagnosing the organ donor as brain dead. Wada was later acquitted, but the surgery left its influence on organ transplant surgery.
To raise awareness about organ donations in Japan and the U.S., the twins are featured in a new documentary “The Power of Two.” The film, which was inspired by their 2007 memoir of the same name, will be screened through Aug. 25 at the Laemmle Sunset 5 in Los Angeles, Calif.
Other screenings nationwide are scheduled throughout the year, with a possible showing in Japan as well. The filmmaker says “The Power of Two” book provides a sense of inspiration and appeal to a broad audience.
“As a filmmaker I’ve always been drawn to people who have those life changing epiphanies and go on unexpected life paths,” said Marc Smolowitz, director and producer. “And then I met Anna and Isa and that sealed the deal. I completely fell in love with them, we had a great connection and we decided that we wanted to jointly pursue this.”
To make the film, which had a budget of about $600,000, the crew traveled to two different countries and 27 cities, said Smolowitz.
While filming the documentary in Japan, the twins spoke publicly about their story, hoping to dispel myths about organ donations.
“It’s not about death, it’s about life and giving people like us life, being remembered as a hero,” said Isabel Stenzel Byrnes. “In Japan there’s a lot of shame about illness, like in many Asian cultures. When you’re sick or you’re different, it’s best to be private about it and not open up.”
Growing up with CF, the twins became regular fixtures at the hospital.
“I think for us having a twin really helped normalize it. It wasn’t way strange because my sister was doing it too,” Anna Stenzel said. “The hospital became a very familiar place.”
Spending their formative years in the hospital as a result of having CF also gave them a clear understanding of their own mortality when other children in the next room died.
As twins, who are half Japanese, having CF is extremely rare.
CF occurs most commonly among Caucasians of Northern European descent, according to the American Lung Association’s 2010 State of Lung Disease in Diverse Communities.
A 2010 study by the Centers for Disease Control and Prevention shows 1 in 31,000 to more than 1 in 100,00 APAs are affected by cystic fibrosis. There were about 16 APA deaths from 1999 to 2006.
“I would say that my dad, in our book we kind of talk about this, my dad is a physicist and he loves numbers,” Isabel Stenzel Brynes about her father Reiner. “And he calculated that being twins of cystic fibrosis was a chance of one in 1.8 billion, based on the numbers he had back in the day.”
Anna Stenzel had a double-lung transplant in 2000 and another in 2007 because her body rejected the first. Isabel Stenzel Brynes had her double-lung transplant in 2004.
On camera the sisters removed their shirts and bared their transplant scars that run horizontal across their chests. The scars are reminders of all they have overcome in their lives.
“I just want to mention the scar is something that I feel very proud of,” Isa Stenzel Brynes explained. “You could call it — in a cliché way — you can call it a badge of courage that got me through the most difficult transition in my life.”
When the sister duo got their new donor lungs, they ran a half marathon, traveled to three continents and climbed a 10,000-foot-tall mountain. Isa Stenzel Brynes also enjoys playing the bagpipe.
On Aug. 19 they traveled to Los Angeles from their homes in Northern California to watch the movie “The Power of Two” on the big screen for the first time in a public venue.
The Hapa twins say they hope the documentary “The Power of Two” will inspire others to give the gift of life like their donors and donor families did.
Over 100,000 people are in need of organ transplants, according to Donate Life America, a non-profit dedicated to increasing organ and tissue donation. Some 18 people a day are estimated to die because of a lack of available donors.
“We represent an incredible transformation that can occur from illness, where people really grab on to life,” Anna Stenzel said. “They really enjoy it, fight for it, love it, live it up and cherish every breath. If it can inspire other people to cherish their health that would make me really happy.”
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