‘Ticking time bomb’: Chiefs legend Art Still aims to spread awareness of rare disease

At six-foot-seven inches tall and 69 years old, Art Still is still a towering presence in every room he enters.

The same qualities that made him a Chiefs Hall of Honor member, including his physical and mental strength, relentless effort, and vocal leadership, also make him a perfect candidate for his newest passion in life — being a spokesperson for amyloidosis.

Amyloidosis is a rare disease where bone marrow produces an abnormal protein called amyloid, according to the University of Kansas Cancer Center. The disease can affect different body parts like the heart, liver, kidneys, and digestive tract.

There are different kinds of amyloidosis with varying symptoms. One in 25 Black people carry a gene that increases the risk of developing the disease. It also affects one in 100,000 people of European descent.

Still’s diagnosis came in late 2023 after being screened at the Tulane University School of Medicine in New Orleans through the NFL Player Care Foundation’s screening program for former players.

That prompted Still and his friend Mike Lane, who is of Irish descent and also suffers from the disease, to start a nonprofit, the Amyloidosis Army.

Still said doctors were concerned about his heart health at a previous appointment in 2018. The jovial Still has always talked about his health issues with optimism, and says he keeps himself in good shape and eats healthy foods.

His doctors gave him and his wife a wake-up call about his heart health.

“You need to tell him [the doctor is] serious because he’s gonna die,” doctors told Still’s wife Liz after conducting tests.

Still wanted to blame family members for his diagnosis that came so late in his life, like his late mother.

“I would have had to dig her up and blame her, and then she would have to dig up her mother and blame, you know, down the line,” Still joked. “It’s just one of those deals. We don’t have no control over it, just what we do with it.”

Still’s family has been ravaged by disease and illness, he said.

One of Still’s older brothers suffered from amyloidosis for years without knowledge of the disease, requiring multiple surgeries. One of Still’s younger brothers needs an organ transplant.

Still’s diagnosis of amyloidosis gave him the answers as to why his family suffers from so many illnesses. Now he’s encouraging his family, who he said is reluctant, and everyone around him to get tested for the disease.

As Still and his wife held their youngest of 25 grandchildren in their arms, they explained how testing for amyloidosis early can help save lives.

“When I found out about amyloidosis, first thing I did [was contact] family. Then I started getting touch with the fellas and all that I played with, the NFL and all too,” Still said. “Because I know they have the same issues, maybe stem from that.”

‘The family secret’

Symptoms of amyloidosis include fatigue, carpal tunnel, swelling in hands, arms, legs or feet, and loss of appetite. Still, who has already had both shoulders replaced and may need knee replacements, thought some of his symptoms like neuropathy, swollen feet, back pains and atrial fibrillation were just the results of his playing days.

The College Football Hall of Famer was an All-American at the University of Kentucky. He was a leader on one of the best teams in program history in 1977 where the Wildcats finished 10-1, ranking as the sixth-best team in the nation by the Associated Press.

Still was the Chiefs’ second overall pick in the 1978 NFL Draft. He became a four-time Pro Bowler and a two-time second-team All-Pro member en route to acquiring legend status in Chiefs Kingdom after an 11-year NFL career with nine seasons in Kansas City.

Still consumed his post-NFL career with businesses and nonprofit work.

Meanwhile, he wracked up aches, pains, torn tendons and surgeries. After learning about amyloidosis, Still dove into his family history.

He learned one of his distant relatives is Irish, which statistically puts him at more risk for the disease. A recent family reunion back in his home state of New Jersey showed him multiple family members who displayed symptoms, he said.

“They all know the family secret,” his wife Liz said. Still shouts from the rooftops about amyloidosis, but said his family has met his awareness with apathy, he said.

“If you don’t [want to be sick], at least get checked,” Still said. “At least know that if you have it, at least you know you have it.”

Depending on the condition, testing can be done with a blood, saliva, or cheek swab sample.

For Amyloidosis Army, Still, Lane and Zubair Shah, the amyloid program director and heart failure and transplant cardiologist at The University of Kansas Health System, go around the Kansas City metro educating people about amyloidosis.

“If there are 100 African Americans in a room, four of them will have it. So this is a big problem,” Shah said. The biggest issue with the disease, Shah said, is that patients are diagnosed very late which leaves few options for treatments.

Testing is also difficult because it is unknown when symptoms of the disease will show.

There’s no cure, but treatment ranges from medication to chemotherapy to organ transplant. And treatment can be costly.

Still receives two injections every three months that cost more than $300,000. While Medicare covers some of the cost, Liz said they still owed almost $8,000 out of pocket. He also takes four different heart medications.

Treatment only slows the effects of amyloidosis and doesn’t reverse the damage done by the disease.

‘Ticking time bomb’

While educating friends and colleagues about amyloidosis, Still has formed a makeshift community of former professional athletes and other people who have suffered from the disease.

Still rattled off names of former NFL players and former NBA players like Don Chaney and Kansas City Kings legend Nate Archibald who have their own amyloidosis battles.

But the Chiefs legend doesn’t let his diagnosis or any other pains stop him from working out consistently. He always tells people around him that he feels good and in shape.

Liz, his wife, is much more fearful of Still’s future years in terms of his health. Sometimes she listens to Still’s heart and can hear the irregular heartbeat if he isn’t taking his medication, which he had been resistant to before his diagnosis.

“It’s a ticking time bomb for me because he’s so optimistic and I’m more realistic,” she said. “You got to have your heart.”

A heart transplant could be in Still’s future but don’t say ‘the T-word’ around him.

Still didn’t love the game of football, and he always treated it like a job.

“It was a job, I enjoyed the job,” Still said. “I didn’t enjoy practice. I didn’t enjoy beating my body up. Only thing I enjoyed was getting paid on Monday.”

If he had known about amyloidosis when he was playing, he thinks he may have been able to delay some of his current symptoms by addressing his disease early.

“It would have been a game changer, because then again, I wouldn’t migrate where I’m at right now,” Still said.