Doctor, patient discuss cystic fibrosis ahead of Santa Barbara fundraising walk
Cystic fibrosis is a rare and life-threatening genetic disorder that most commonly affects the lungs and respiratory system.
And it can affect other organs, including those related to the digestive and reproductive systems.
But strides have been made in research and treatments, and it’s making a difference for patients.
“The life expectancy for CF has dramatically improved over time. In the 1950s it was only three years old. It is now well into the 50s because of the effect of newer therapies, multidisciplinary care centers and better antibiotics,” Dr. Richard Belkin, medical director of Adult CF Program at Santa Barbara Cottage Hospital, told the News-Press. “The majority of patients have lung involvement and the majority of CF patients die from progressive lung disease. It is a rare and orphan disease.”
“There are close to 40,000 children and adults living with cystic fibrosis in the United States (and an estimated 105,000 people have been diagnosed with CF across 94 countries), and CF can affect people of every racial and ethnic group,” according to the Cystic Fibrosis Foundation.
The foundation remains determined in its efforts to help cystic fibrosis patients.
On Nov. 12, the foundation’s Los Angeles chapter will host a walk to raise funds and awareness at Chase Palm Park in Santa Barbara.
The walk is called “Santa Barbara Great Strides.” Check-in is at 9:30 a.m., and the three-mile walk will start at 10 a.m. on the park’s soccer field.
As of Friday evening, walk participants had raised more than $14,600, and the goal is $45,000.
Cystic fibrosis impacts people such as Santa Barbara resident Taylor Marmo. In addition to living with CF, Ms. Marmo has two siblings who have CF, but they have mild symptoms.
For Ms. Marmo, a diagnosis of cystic fibrosis came after a lifetime of medical problems.
But after diagnosis and medications, she’s doing well today and said she feels like she’s been given back her life.
“I was born in September 1993, the first out of five kids,” Ms. Marmo told the News-Press. “I was always small and labeled as a failure to thrive, growing up. There were certain things throughout my life where I had chronic sinus infection, was always sick and suffered from abdominal pain.
“My parents looked at it as avoiding going to school or being nervous, which was not my personality,” she said.
“I was heavy into drinking and drugs in high school. I landed in hospital due to drinking at 17 and had pancreatitis,” Ms. Marmo said. “I went into rehab and got sober at 17. I had a second episode of pancreatitis, but doctors in L.A. wouldn’t treat me due to my addiction.
“Dr. Richard Belkin came on my case and followed as my asthma doctor to make sure things would run smoothly,” Ms. Marmo said.
“Dr. Belkin said, ‘I think it’s more than an addiction,’ ” Ms. Marmo recalled.
Dr. Belkin started running tests, and at age 18, Ms. Marmo was diagnosed with cystic fibrosis.
CF affected her pancreas, and Ms. Marmo participated in experimental therapy.
“I was put on Kalydeco via compassionate use back in 2014. I took it inconsistently because I was hospitalized so much,” said Ms. Marmo. Kalydeco is a medication used to treat CF.
Ms. Marmo has three gene mutations. One mutation from each parent and one which she created in utero.
Dr. Belkin said there’s currently no cure for cystic fibrosis, but new research is looking into it.
“The Cystic Fibrosis Foundation is working on finding alternative therapies,” Dr. Belkin said.
Ms. Marmo said she didn’t live any sort of life before being on medication.
“I was bed ridden and on pain meds all the time,” she said. “At 21, I told my dad that I was tired of living. I was miserable and depressed.”
She further explained what treatments she uses. “When I’m sick, I do inhaler treatments. I have a portacath in my chest and I do IV treatments through that.”
She said she became pregnant in 2017 and was at her healthiest during the pregnancy. She gave birth to her second child two years later, but that pregnancy proved difficult, and she experienced pancreatitis for a month.
“I was put on Kalydeco in 2020 and got pregnant with my third daughter,” she said. “I had a healthy pregnancy. I only got pancreatitis once, and it was a pretty mild episode.
“At the end of October, it will be two years without an episode of pancreatitis which is the longest I have ever gone,” said Ms. Marmo.
“Pregnancy seemed to agree with me, and my children gave me a reason to live. I live a whole new life that I never thought I would ever get to live. A few years ago I never thought I would get on a plane due to dehydration causing pancreatitis. I feel like I have been given back my life, which is incredible,” said Ms. Marmo.
“CF doesn’t look the same on everybody,” Ms. Marmo continued. “People have a preconceived notion that if you look fine on the outside, you must be fine on the inside. My disease is very silent. Unless I tell people, no one knows how I feel on the inside. It can be a silent disease that you suffer through alone.
“No one knows what you are going through except others with CF,” said Ms. Marmo.
Dr. Belkin, who’s among the walkers in the Great Strides event, said cystic fibrosis is a disease of childhood and that people are now going into their adult years with relatively normal and productive lives.
“With new therapies, CF patients are doing better.”