A Childhood Dream Come True: Raising Awareness of Illness

KCETLink is proud to present The Power of Two, a story of twin sisters, two cultures, and two new chances at life. Isabel Stenzel Byrnes introduces the film about her and her twin sister Anabel Stenzel, and their lifelong fight to raise awareness about cystic fibrosis.

When my twin sister and I were young teenagers and spent many weeks of our lives in the hospital for tune-ups related to cystic fibrosis (CF), we encountered numerous ignorant comments about our disease. After about the tenth time someone asked, "How did you catch your CF?," we were exasperated. The option of a Make-A-Wish Foundation grant was offered to us. Ana and I together wished more than anything that we could spread the word about CF. If more people knew about CF, then there could be more compassion, more understanding, and hopefully more mobilization for a cure. We asked to be on television as patients with CF.

Power of Two Production Still. Power of 2/Flickr

Well, fast forward nearly 30 years, and after a long, hard fight against cystic fibrosis, and three miraculous double lung transplants between us, we are still alive, at 41. Our wish to spread the word about cystic fibrosis, coupled with the life-saving act of organ donation, has remained strong. In 2007, we published our memoir, "The Power of Two: A Twin Triumph over Cystic Fibrosis," and in 2011, the memoir inspired a documentary film also called "The Power Of Two." Ana and I have toured the country and my mother's country of Japan to educate the public about CF and organ donation. Just last month, I attended a Detroit MOTTEP (Minority Organ and Tissue Transplant Education Program) conference to give a lecture on Asian American issues in organ donation. I went to Kansas City to lecture to social workers about resilience in chronic illness. Next weekend, Ana and I are going to Portland to support a cystic fibrosis fundraiser. Early in May, we'll give a TEDx lecture on the theme of time. Wherever we go, our message remains the same: that every breath is a gift and that everyone has a stake in the conversation about organ donation.

Power of Two Production Still. Power of 2/Flickr.

Well, our childhood dreams are coming true once again next month. We are pleased that our documentary film will be premiering in May on Link TV, a satellite television station with over 25 million viewers. The film will be broken into three segments, with short live interviews following each segment. Because we remain highly connected to the CF and transplant communities, we're reaching out to other people to share their stories. Life continues to unfold, and our stories are repeated with varying outcomes. One of our 23-year-old friends with CF just lost her battle on March 17th, after waiting for several months on the waiting list for lungs. One of our other friends just celebrated two years of deep breathing, thanks to her gift of life. We are grateful that there has been so much interest in our lives, but I want more than anything that our story moves people to action: to support CF research and to sign up to be an organ donor. Only then, will all our storytelling play a small part in making life easier for the next generation of CF patients, and all those with terminal illnesses who are awaiting the gift of an organ transplant.

Power of Two Production Still. Power of 2/Flickr.