Beth Sercus, a 53-year-old accounting consultant from Wharton, N.J., remembers the day her 3-year-old Brian was diagnosed with cystic fibrosis, a genetic disease that affects the lungs and digestive system.
A resident she had never met walked into the hospital room and said, "We think your son might have cystic fibrosis. He may live to be 20 years old. You know, if he had cancer, he would have a better chance of survival."
"Then he walked out of the room," said Sercus. "I was 25, been divorced for one month, had no idea where his dad was, and had never heard of CF. I called my mom right away in tears."
Brian Sercus surpassed those expectations and lived to be 30. He died of a virulent infection last summer, just hours away from a double lung transplant surgery that might have given him decades more of life.
Now, in his memory, his mother has been an outspoken voice for medical programs that are tailored to the social and intellectual needs of adult CF patients.
With medical advances – new medications and more sophisticated transplantation techniques -- patients are now living well into their 30s and 40s, and for the first time this year, doctors say the number of adults with cystic fibrosis will exceed the number of children with the disease.
But the hospitals and rehab facilities where adult patients spend weeks and sometimes months of their lives have not yet caught up.
Sercus said that as her son grew into adulthood -- getting a college degree and later working for a health insurance company -- the medical community still treated him like a child.
When he was 20, Brian was still going to the Babies Hospital at Columbia Presbyterian.
Later, at an adult hospital, the medical staff didn't know what to do with him. "He was put in a room with a 90-year-old man and the doctors and nurses had no clue how to treat CF," said Sercus. "There was nothing for Brian to do, except just sit in bed and watch TV."
Cystic fibrosis, or CF, is an inherited disease that causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening infections.
About 30,000 Americans have the disease and 1,000 new cases are diagnosed each year, according to the Cystic Fibrosis Foundation.
Nearly 1,600 people with the disease have received lung transplants since 1991, according to the CF Patient Registry. As many as 90 percent are alive one year after transplantation and half are still living after five years.
Justine Komin, a 26-year-old from Wichita, Kan., was one of the lucky ones. She had a life-saving double lung transplant at the University of Minnesota in 2010. Her 45-year old boyfriend is living with the disease, and so is her 55-year-old aunt.
For Komin, like Brian Sercus, her survival depends on frequent and sometimes lengthy hospitalizations to clear her lungs of bacteria-prone secretions.
"Before my transplant, I was in the children's ward and I was 23 at the time," said Komin. "The nurses didn't know how to accommodate me. I am so knowledgeable about my disease and what worked and what didn't ... They just weren't mentally prepared to deal with a patient who wanted a say."
Komin was often in the hospital for two weeks at a time; her therapy included 40-minute sessions five times a day to clean out her lungs. But dividing their time between adults and children, the respiratory therapists often had to cut those sessions short.
And patients like Komin and Sercus are left to languish with few programs geared to their age group, or facilities that might allow them to continue working.