Middletown Woman Using Rare Disease To Help Others

When Anna Payne stood in the Pennsylvania State Capitol last week, she was there for something she knows a lot about.

The Middletown resident, who serves on the Pennsylvania Rare Disease Advisory Council, was in Harrisburg to support Pennsylvania Rare Disease Day 2019.

Payne was born with cystic fibrosis, a genetic disease that wreaks havoc on the lungs, digestive system, and other vital organs. It’s an illness that has about 30,000 diagnosed cases in America, according to the National Organization for Rare Disorders.

“For me, it’s an honor and a privilege to lend my life experience and my voice to the council as someone who grew up with a rare disease,” she said.

While serving on the council, Payne has sat in on meetings, offered advice, and learned the stories of families dealing with rare diseases.

“I can give them a voice,” she said.

The council features rare disease patients, doctors, researchers, nurses, and members of the insurance industry.

The advisory council, which was established in 2017, presented a report last summer that states where current efforts stand, barriers to patients, and provides goals and objectives.

The council, according to Payne, has recently started collecting data through a survey sent to patients with rare illnesses and their families.

With cystic fibrosis, Payne knows first hand the struggles and challenges that come along with a rare disease. A myriad of doctors visits, time for tests, extended leaves from work due to illness can cause a struggle with finances and also just getting along with general life.

“Some people put off getting married to keep benefits. Some don’t take certain jobs, even if the pay is better, but the health care benefits aren’t as good,” Payne said.

“In the survey, we want to find out what the big picture is and how it impacts their life as a whole.”

For the 32 year old, she spends three to four hours a day taking part in breathing treatments and having to take as many as 30 to 50 pills.

“People don’t see me waking up and coughing for 15 to 30 minutes,” she said. “They don’t see me put on my vest and do breathing treatments.”

The Cystic Fibrosis Foundation has noted that research and improved treatments mean that those with the disease can live longer than ever before. A baby born with cystic fibrosis in 2016 has an average life expectation of 47 years, a major jump from just a few decades ago.

Growing up, Payne said she didn’t know if she would live to 30. Just recently, the 32 year old married and lives an active life, is involved in local politics, has helped raised tens of thousands of dollars for cystic fibrosis research, and keeps busy at work.

“Hopefully a child born today won’t have to worry about asking ‘what happens if I don’t make it to 30?’”

“Life is really short, and if I can help someone else have a better life … that’s the kind of impact I want to have in the world.”

Payne recently was announced as a semi-finalists for this year’s KYW News Radio Women’s Achievement Award. Voting runs through May 20.