Twins take on cystic fibrosis

By Lisa Baertlein

LOS ANGELES (Reuters Life!) - When identical twins Anabel Stenzel and Isabel Stenzel Byrnes were born with cystic fibrosis in 1972, they were not expected to live to adulthood.

Three decades -- and three lung transplants later -- they are telling their story in "The Power of Two."

While theirs is a story about nurturing hope in the face of impossible odds, the book is also an honest account of the upheaval that serious illness inflicts on even the most devoted and well-intentioned families.

Unlucky statistics loomed large in the lives of the Los Angeles-born sisters, who are among the 70,000 people around the world estimated to have the genetic disease.

Cystic fibrosis is rare in people of Asian descent, and as daughters of a Japanese mother, their risk was supposed to have been minuscule.

Their father, a physicist from Germany, once figured that the likelihood of half-Japanese identical twins being born with cystic fibrosis was roughly 1 in 1.8 billion.

But the timing of their birth helped blunt such misfortune.

Ana and Isa, as they are known, were part of the generation that saw medical advances -- from life-saving drugs to organ transplants -- transform cystic fibrosis from a fatal disease of youth to a manageable, but life-threatening disease that people can survive into their 30s, 40s or longer.

"My dad always told us when we were little that we shared our disease," said Ana, who recently had a rare, second lung transplant after her body suddenly rejected the lungs she received nearly seven years ago.

As they matured, Ana and Isa took responsibility for doing their therapy -- which included pounding each others chests and backs so they could cough up the thick, sticky mucus that clogged their lungs and made them susceptible to dangerous infections.

"This allowed us to gain independence from our parents and to pursue the normal lives we have had," said Isa, who with her sister graduated from Stanford and lived for a time in Japan.

The women now hike, bike, blog and, in Isa's case, play bagpipes. They advocate for cystic fibrosis and organ donation and ended their book with accounts of meeting their donors' parents.

Still, they are not free of health worries. The threat of organ rejection looms large and something as common as a cold virus can send them back to the hospital.

"The quality of life is so much better that it's worth that risk," said Ana.

She hopes to survive as long with a transplant as she did with cystic fibrosis -- a goal that would have her living into her mid-50s.

The women, who have a Web site at www.stenzeltwins.com, say they are ready to move on from the dramatic medical crises that marked their younger days, and have no plans for a sequel.

Ana, who is still recovering from her latest transplant, says she is looking forward to doing "normal" things: working, volunteering, traveling, dating and paying her mortgage.

"In the next half of our lives, I'm hoping we won't have as much dramatic material," Isa said.