Support groups help patients navigate symptoms with no known cause or cure
HENDERSONVILLE, N.C. (FOX Carolina) - Primary biliary cholangitis, or PBC, affects less than 1% of the population. Doctors do not know exactly what causes it, and there is no cure. Now, a Western North Carolina woman is teaming up with others to help people recognize the subtle symptoms of this sometimes debilitating disease.
Hilary Paradise lives in Hendersonville and lives with PBC.
“My cholesterol levels were over 300. And so I couldn’t get life insurance. And then I just was itching so bad. I mean, I couldn’t have anybody touch me,” Paradise said.
“I remember somebody buying me a gift certificate for a massage. And I was like, there’s no way I’m having anybody touch me,” she continued.
Paradise said it took roughly one to two years after she moved to North Carolina to get a diagnosis.
PBC damages the small bile ducts in the liver. Over time, that damage can lead to scarring and cirrhosis.
For some patients, early symptoms can be easy to overlook, including extreme fatigue and an intense, persistent itch.
“It’s not an itch that you can scratch off,” Paradise said.
Carol Roberts is president of PBCers of America, a support organization for people living with the disease. Roberts was diagnosed in 1999.
“It is a deep down in your skin, under your skin, you cannot relieve it. It’s almost more of a burning, crawling sensation than an actual itch,” Roberts said.
Roberts said the fatigue associated with PBC is also different.
“You could sleep in the whole day and you would still wake up fatigued. It’s just like you’ve hit the wall and you cannot move any farther. You’re trying to swim through something really thick that’s holding you back. Almost like being underwater,” Roberts said.
“I like to give people hope, but a realistic hope, because everyone’s journey is so different,” she added.
For Roberts, that journey eventually led to liver failure and a liver transplant.
Her advanced liver disease also caused severe fluid buildup in her abdomen.
“They were removing six and a half liters of fluid every [week], which equals about 20 pounds,” Roberts said.
While PBC can look different from patient to patient, Paradise said the stigma surrounding liver disease can be the same.
“It’s not a disease that’s caused by alcohol. A lot of people aren’t familiar with that. They think that the liver disease is because the person has an alcohol problem. And that’s not it at all,” Paradise said.
Roberts said that stigma can extend into health care settings.
“You can go into an ER and it’s a rare disease. Not everyone’s going to know what’s going on, but you can sense that they’re judging you,” Roberts said.
“They just assume that you’ve abused alcohol or drugs and that’s why,” Roberts said.
Because PBC can be difficult to recognize, Paradise said some people may live with symptoms for years before getting answers or treatment.
She said that can be especially true in smaller communities, where doctors may not see the disease often.
For Paradise, finding other people who understand has been just as important as finding the right doctor.
“The support group has helped me figure out about symptoms, figured out what to do, where to go, how to deal with things,” Paradise said.
“You’re not alone. And there’s a lot of people around that will help you with it,” Paradise said.
Roberts said the organization’s goal is for every newly diagnosed patient to find that same connection.
“Personally, I just want to make sure that everyone that’s diagnosed finds some support someplace and realizes that they don’t have to deal with us alone,” Roberts said.
Paradise chairs a PBC support group connecting people across the Southeast. The group offers both online and in-person support, something Paradise said can make all the difference when living with a rare disease.
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