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The Signs Were There: How Pete Shaw and His Team Faced an Unexpected Opponent
October 15, 2026
For former professional football player Pete Shaw, recognizing the signs of hereditary transthyretin amyloidosis with cardiomyopathy (hATTR-CM) meant looking beyond old injuries and leaning on the people who knew him best.
Pete spent years playing professional football, where he learned to read what was happening around him, adjust when the unexpected came his way and rely on the teammates beside him.
Years later, those lessons would take on a different meaning.
Pete was experiencing joint pain, carpal tunnel syndrome, trigger finger and shortness of breath. But after a career spent putting his body through the demands of professional football, there always seemed to be a reasonable explanation.
Old injuries. Getting older. Wear and tear.
It was Pete’s wife, Kari, who began to notice that something was off.
The Signs Were There
Kari saw changes that Pete himself had been brushing aside. He was getting winded and dizzy doing certain activities, such as walking up a flight of stairs.
The turning point came when Pete collapsed on his office floor, leading to an emergency hospital visit. After testing at the hospital, a cardiologist suspected amyloidosis and referred him to a specialist, Dr. Rajeev Mohan, who diagnosed Pete with hereditary ATTR-CM at age 64.
Suddenly, symptoms that had seemed unrelated began to make sense.
Although it had taken years to recognize the symptoms and obtain a diagnosis, finding out that it was not just aging or old football injuries contributing to Pete’s feeling of being run down didn’t just give him new hope; it provided an opportunity to take charge of his health.
“Looking back, there were signs I didn’t connect at the time. I hope sharing my experience helps others recognize that when something doesn’t feel right, you should talk with your doctor,” Pete reflects. Importance of Identifying ATTR-CM ATTR-CM is an underrecognized, rapidly progressive disease caused by the buildup of misfolded transthyretin (TTR) protein in the heart muscle.1 Over time, these TTR deposits cause the walls of the heart to thicken and stiffen, making it difficult for the heart to pump blood effectively to the rest of the body, causing tiredness, shortness of breath and swelling in the legs.2-4
Recognizing ATTR-CM can be challenging because many of its symptoms, such as shortness of breath, fatigue, dizziness and swelling in the legs, can look like other, more common conditions. And some signs can appear outside the heart years earlier, but as what happened for Pete, sometimes it can take a while to connect the dots.2-4
Looking at symptoms together – and the bigger picture – can be important. Patients are often misdiagnosed and can wait an average of six years to pinpoint the true cause.3,5 Without early recognition, these delays can lead to worsening complications, including heart failure and increased risk of death.3,6
As many as 150,000 Americans are believed to be living with ATTR-CM,7 yet up to 80% remain undiagnosed or untreated.8 Furthermore, African Americans in particular face a higher risk for hereditary ATTR-CM, highlighting the urgent need for greater disease awareness and early recognition within African American families and communities.9
Knowing Who Is on Your Team
Pete did not face his diagnosis on his own. Each person plays a different role. “Football taught me that nobody succeeds alone, and managing my health is no different. Kari is my co-captain and strongest advocate, my doctors are my coaches guiding the game plan and my kids and grandkids complete the bench. My family is what keeps me motivated to stay engaged in my care every single day,” Pete explains.
For Pete, that team has made a difference. And it is a reminder that caregivers and loved ones can often see changes that the person experiencing them may not recognize themselves.
Pay Attention to What Your Body Is Telling You
If you or someone you love is experiencing possible signs or symptoms of ATTR-CM, talk with a healthcare professional about what you are noticing and whether further evaluation may be appropriate. Because when it comes to your health, recognizing the signs can be the first step toward finding answers, and with ATTR-CM, early diagnosis is important.4
“I spent my entire football career playing defense,” said Pete, “but when it comes to your health, you have to play offense. If you’re experiencing a mix of symptoms like carpal tunnel, joint pain or getting out of breath, don’t wait or guess. Build your team, talk to your doctor and keep asking questions.”
Learn more about Pete’s story and find resources for talking with your healthcare team at ATTRGamePlan.com.
Pete Shaw and Dr. Mohan are being compensated for their time by Alnylam Pharmaceuticals to share Pete’s story and raise awareness of ATTR-CM.
References:
- Witteles RM, Bokhari S, Damy T, et al. JACC Heart Fail. 2019;7(8):709-716.
- Nativi-Nicolau JN, Karam C, Khella S, et al. Heart Fail Rev. 2022;27(3):785-793.
- Rozenbaum MH, Large S, Bhambri R, et al. Cardiol Ther. 2021;10(1):141-159.
- National Heart, Lung, and Blood Institute. Cardiomyopathy. Available at: https://www.nhlbi.nih.gov/health/cardiomyopathy.
- Gertz MA, Adams D, Ando Y, et al. BMC Fam Pract. 2020;21(1):198.
- Maurer MS, Bokhari S, Damy T, et al. Circ Heart Fail. 2019;12(9):e006075.
- Ruberg FL, Maurer MS. JAMA. 2024;331(9):778-791.
- Data on file. ATTR-CM Modeling Data. Alnylam Pharmaceuticals, Inc.
- Maurer MS, Hanna M, Grogan M, et al. J Am Coll Cardiol. 2016;68(2):161-172.
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