Since he was a teenager, influencer and singer JJ Hannon has accomplished remarkable feats – from touring five continents to earning over a million followers on social media. But in November of 2023, things changed for JJ when he was admitted to the hospital and diagnosed with a rare liver disease.
He recalled, “I lost over 40 pounds. I felt like I was going to die. I had no energy left in me. I would wake up some mornings covered in sweat. I couldn't figure out what it was.” Things got so bad that his mom and girlfriend forced him to go to the hospital, but he couldn’t even move. “I literally needed to be in an ambulance to be taken to the hospital.”
From there, doctors conducted tests every day for two months straight. They went inside his liver, and in one week, he had to be anesthetized four different times. Eventually, the liver biopsy showed that his bile ducts were 50% gone.
This led to his diagnosis of two rare liver diseases. The first is Primary Sclerosing Cholangitis (PSC), a rare disease that attacks the bile ducts. And the second, Vanishing Bile Duct Syndrome (VBDS), makes PSC more aggressive. The symptoms are usually pain in the abdomen, fatigue, jaundice, and sudden loss of weight.
“When I was first diagnosed,” JJ admitted, “I didn’t want to live anymore. I didn’t want to fight any longer, so I sat in bed for five days straight. But I looked into my mom and niece’s eyes, and I felt that I needed to make a difference and wake up. I went to Gary Vee's office – a notable businessman - and he felt that I was given this disease for a reason. I’m going to change the trajectory of this rare disease.”
Courtesy of JJ Hannon
When it comes to the trajectory of JJ’s prognosis, the only option left is a liver transplant. Unfortunately, due to his autoimmune hepatitis, JJ faces a high chance of rejection of the liver transplant. Another complication is JJ's enlarged spleen, which, if it doesn’t go down, he’ll likely “never be able to play sports again.” Basketball is one of JJ’s biggest passions, as “it’s a way to burn energy” for him. He used to play basketball very often, but before his diagnosis, he was no longer able to compete; this was a warning sign for JJ and one of the things that drove him to go to the hospital.
For JJ, it’s a struggle, but that doesn’t stop his ambitions for the disease. He is starting the JJ Hannon Foundation. Even though some days find him barely able to get out of bed, he continues to work tirelessly to bring about change in this disease - something we can all learn from.
JJ elaborated, “One thing I noticed is it’s very expensive to get the correct foods for this disease. I’m very fortunate to be able to afford nutrition, and this non-profit foundation will give back to other patients.” He doesn’t plan on stopping his social media ambitions either, as he’s planning a “crazy launch with music videos dropping weekly” on YouTube. Additionally, JJ is back on the music scene with his latest single, “Not Over It,” claiming the 76th spot on the USA pop iTunes chart.
Courtesy of JJ Hannon
However, PSC’s trajectory won’t improve if underdiagnosing continues. “It’s a very underdiagnosed disease,” JJ agreed, “They are not on top of it. I’ve spoken with PSC patients, and it can take up to eight months for diagnosis. It wipes you out if you leave it untreated even if you eat a lot.”
And JJ has some lessons to share from his journey - “I have completely changed my diet. Every little thing I put into my body matters. Before this [diagnosis], I would eat two large fries from McDonald’s, two large hamburgers, and whatever I could get on the road - candy, sour straws, I didn’t care.”
But the impact of his diagnosis doesn't stop there; it taught him more about himself and life. He explained, “I’m going to be the Magic Johnson for this disease (PSC). I’ve realized that I’ve spent so much time worrying about the things that didn’t matter.
And I’ve learned that every day counts and every second matters. This allowed me to redefine myself as a person. But most importantly, I hope that anyone struggling with any disease knows that they are strong. I want to let everyone know that there is hope. Stay tuned, because there are some amazing things for people struggling.”
Courtesy of JJ Hannon
Raising awareness is important because it’s the only way PSC and VBS will stop being underdiagnosed. He concluded, “I hope I bring awareness to the disease. I hope this article gets people checked out. I also hope that it can bring us one step closer to enough attention so that there can be a cure.”
“Never give up hope” - JJ Hannon