When Jessica Bartky was diagnosed with pulmonary hypertension (PH) seven years ago, she and her husband Jack began searching the internet for information about the disease. They quickly found the Pulmonary Hypertension Association (PHA)’s myriad resources for education, advocacy and support.
In turn, they began raising money to support PHA and raise awareness of PH. They use Facebook and other platforms for online fundraisers, and they ramp up their social media presence for PH Awareness Month, Rare Disease Day and World PH Day.
This year, they’re going old school to get the word out about World PH Day. Jack, a licensed ham radio operator for 24 years, created a special station to promote PH awareness to amateur radio enthusiasts throughout the world. Although World PH Day falls on May 5 in North America, the station goes live May 4 and runs through May 6 so people can tune in from every time zone.
“As a ham operator, I use radio to communicate with other amateurs all over the world using voice, Morse code and computeraided digital modes, says Jack who operates K2JSS, “a modest station with wire hung through the trees.” With hundreds of contacts in every state, 60 countries and even Antartica, he hopes to reach thousands of people who tune in to special event stations.
Taking to the airwaves
Jack will operate a station with the call sign W2H to promote PH awareness. Special event stations generally attract a lot of interest because they’re promoted in advance. When special stations are on air, operators all over the world try to make contact to record the special call signs in their logbooks.
Jack and Jessica hope operators who hearing the special call will look up more information about World PH Day online. They created a modest website that links to the PHA and World PH Day sites. They also created a special postcard with information about World PH Day and the special event station. Known as a QSL card, it goes to operators who contact the World PH Day station.
Jack got the idea for the World PH Day station a few months ago from another ham radio operator, who was planning a station to mark Rare Disease Day. “I thought, ‘Wouldn’t it be great to do that for World PH Day?’”
The goal is to talk to as many people on the air as possible about what PH is, Jessica says. She and Jack want to help people recognize PH symptoms and put them on the path to proper diagnosis.
Jessica had been in the hospital for four and a half months with Crohn’s disease, a kidney issue and a hospital-acquired infection when she started having breathing and heart issues. Her cardiologist, pulmonologist and another doctor in the pulmonologist’s practice suspected she had PH. Eventually, she was diagnosed with a hereditary form of PH. Her care team believes it showed up earlier than usual because of trauma associated with her multiple surgeries.
Initially, her prognosis was six to 12 months. But thanks to therapy, her health improved. Although her PH has advanced again in the past two years, she says she remains feisty and committed to spreading PH awareness.
“I teach people to be positive,” she says. “Don’t just wallow in the disease. Spread awareness, be active, spend time with your family, and don’t be afraid to talk about [PH].”
In the current climate, Jessica spends more time than ever with Jack and their five children, ages 21, 17, 15, 9 and 7. She and Jack met as freshmen in high school and married a month after graduation. They have been married 22 years.
Like Jack, Jessica also has followers all over the world, but hers read her blog. She started writing funny stories about her younger kids and the family dogs, but then covered more serious topics, such as PH and Crohn’s. Now she’s working on two books, one for adults and one to help children deal with grief.
For the next few days, the couple will continue to spread the word about Jack’s World PH Day station. Jack recruited four other operators to help him run the station and promote PH awareness.
“Ham radio gives the mission of PHA another platform,” he says, noting that some ham radio operators might not use the internet or social media regularly. “This gives PHA and World PH Day another means of reaching them.”
How you can promote World PH Day
You don’t need a ham radio license to join the global PH community on World PH Day. Spread the word on your social media channels with the #WorldPHDay2020 hashtag. Visit WorldPHDay.org to find information, event details and resources in English, Spanish and French. Download the digital toolkit for sample posts, artwork, photos and Facebook frames you can use to raise awareness of PH.