October 15th, 2024

By Dr. Kevin Williams, Chief Medical Officer for Rare Disease at Pfizer

The “Ask Dr. Kevin” series is brought to you by Pfizer Rare Disease in collaboration with the National Newspaper Publishers Association (NNPA) to increase understanding of hereditary ATTR-CM, or transthyretin amyloid cardiomyopathy, and the risk to African Americans.

There are two sub-types of ATTR-CM, wild-type and hereditary. Wild-type ATTR-CM is thought to be the most common form of ATTR-CM, is mostly associated with men over the age of 60 and is not caused by a mutation in a person’s genes. Most wild-type patients are white. Hereditary ATTR-CM is inherited from a relative and is due to genetics, affecting both men and women. In the United States, the most common genetic mutation associated with hereditary ATTR-CM is found almost exclusively in people of African or Afro-Caribbean descent. Symptom onset can occur in people as early as their 50s or 60s; however, people who have the mutation may never develop symptoms of the disease.

As I continue this series, I’d like to share with you the personal experience of one person living with hereditary ATTR-CM, Randy, and his wife and caregiver, Priscilla.

Randy is a 75-year-old man, originally from Trinidad and Tobago, now living in New Orleans. In 2018, he was officially diagnosed with hereditary ATTR-CM, a rare, life-threatening disease that’s associated with heart failure, but Randy actually began experiencing symptoms four years earlier. Unfortunately, Randy’s long road to diagnosis and his struggle to find information about the condition is common for patients with ATTR-CM. Awareness among patients, and even primary care physicians and cardiologists remains low, which results in ATTR-CM being significantly underdiagnosed.

Randy’s Journey to Diagnosis

In 2014, Randy was diagnosed with carpal tunnel syndrome (numbness, tingling, and pain in the fingers), which at first seemed to be associated with his former job as a college professor, a profession that forced him to spend many workdays connected to his computer keyboard. Around this time, during his routine jogs, he also started to notice tingling in his extremities and shortness of breath but did not think the symptoms could be related.

For patients with ATTR-CM, the disease often presents with symptoms of heart failure, such as fatigue, shortness of breath and peripheral edema (swelling in the lower legs), but may also include other symptoms such as carpal tunnel syndrome, gastrointestinal issues (constipation, nausea, diarrhea), peripheral neuropathy (decreased or strange tingling sensation or pain in feet or toes), or lumbar spinal stenosis (narrowing of the spine that can cause pain or numbness in the lower back and legs).

As Randy’s symptoms continued to progress, he realized something was wrong, prompting him to follow up with his doctor. Randy’s doctor initially credited his shortness of breath to chronic obstructive pulmonary disease brought on by heavy smoking during his youth and the poor air quality in New Orleans. However, the other symptoms he was experiencing still didn’t quite add up.

Randy’s Diagnosis

Then, one day, Randy was visibly struggling to climb the stairs at his daughter’s townhouse. His daughter, who is a healthcare professional, immediately knew he was in cardiac distress and rushed Randy to the ER for testing.

After receiving multiple diagnostic tests, he learned that he had congestive heart failure and the walls of his heart were stiff. His cardiologist also had Randy undergo genetic testing, which helped inform his diagnosis of hereditary ATTR-CM, the type of ATTR-CM that is inherited from a relative.

Randy’s Life with ATTR-CM

Following Randy’s diagnosis, he and his wife, Priscilla, quickly realized their daily lives would be changed drastically. Priscilla started to pick up even more responsibilities around the house, while also helping Randy manage his ATTR-CM. Priscilla shared, “When Randy was first diagnosed, I was surprised because he had always been very healthy. Overall, I would say my reaction was shock.”

“I was going to my primary care doctor about my shortness of breath, but the connection to ATTR-CM was not made,” Randy recalled. “Once I got the diagnosis, my cardiologist was the main source of information, but even so, I did a lot of research on my own. We really had to inform ourselves.”

Despite the challenges of life with ATTR-CM, Randy and Priscilla are now advocating to bring attention to the disease, as they believe there is not nearly enough education and awareness about ATTR-CM and the importance of early testing, especially within the African American community. With the disproportionate rates of heart disease and heart failure in this population, it’s important to find the primary cause of heart conditions with the help of a cardiologist.

If you’d like to learn more about hereditary ATTR-CM, including signs and symptoms, visit www.YourHeartsMessage.com.

*Dr. Kevin Williams is the Chief Medical Officer for Rare Disease at Pfizer. He pursued medicine after being inspired by his father’s work as a general practitioner in his hometown of Baton Rouge, Louisiana. Dr. Kevin is passionate about raising awareness and increasing understanding of ATTR-CM in the African American community. You can follow Pfizer on Facebook and Twitter.

October 16, 2023, HOUSTON, TX – Congressional Candidate Amanda Edwards has raised over $1 million in less than 4 months, a substantial sum that helps bolster the frontrunner status of the former At-Large Houston City Council Member in her bid for U.S. Congress. Edwards raised over $433,000 in Q3 of 2023. This strong Q3 report expands on a successful Q2 where Edwards announced just 11 days after declaring her candidacy that she had raised over $600,000. With over $829,000 in cash-on-hand at the end of the September 30th financial reporting period, Edwards proves again that she is the clear frontrunner in the race. “I am beyond grateful for the strong outpouring of support that will help me to win this race and serve the incredible people of the 18th Congressional District,” said Edwards. “We are at a critical juncture in our nation’s trajectory, and we need to send servant leaders to Congress who can deliver the results the community deserves. The strong support from our supporters will help us to cultivate an 18th Congressional District where everyone in it can thrive.” Edwards said. “Amanda understands the challenges that the hard-working folks of the 18th Congressional District face because she has never lost sight of who she is or where she comes from; she was born and raised right here in the 18th Congressional District of Houston,” said Kathryn McNiel, spokesperson for Edwards’ campaign. Edwards has been endorsed by Higher Heights PAC, Collective PAC, Krimson PAC, and the Brady PAC. She has also been supported by Beto O’Rourke, among many others. About Amanda: Amanda is a native Houstonian, attorney and former At-Large Houston City Council Member. Amanda is a graduate of Eisenhower High School in Aldine ISD. Edwards earned a B.A. from Emory University and a J.D. from Harvard Law School. Edwards practiced law at Vinson & Elkins LLP and Bracewell LLP before entering public service. Edwards is a life-long member of St. Monica Catholic Church in Acres Homes. For more information, please visit www.edwardsforhouston.com

As September 13th rolls around, we extend our warmest birthday wishes to the creative powerhouse, Tyler Perry, a man whose indomitable spirit and groundbreaking work have left an indelible mark on the world of entertainment. With his multifaceted talents as an actor, playwright, screenwriter, producer, and director, Tyler Perry has not only entertained but also inspired audiences worldwide, particularly within the African-American community, where his influence and role have been nothing short of powerful. Born in New Orleans, Louisiana, in 1969, Tyler Perry’s journey to stardom was a path riddled with adversity. Raised in a turbulent household, he found refuge in writing, using it as a therapeutic outlet. This period of introspection gave rise to one of his most iconic creations, Madea, a vivacious, no-nonsense grandmother who would later become a beloved figure in Perry’s works, offering a unique blend of humor and profound life lessons. Despite facing numerous challenges, including rejection and financial struggles, Perry’s determination and unwavering belief in his abilities propelled him forward. In 1992, he staged his first play, “I Know I’ve Been Changed,” which, although met with limited success, was a pivotal moment in his career. Unfazed by initial setbacks, Perry continued to hone his craft, and by 1998, he had successfully produced a string of stage plays that showcased his storytelling prowess.

Calling all teenage student-athletes! If you have dreams of playing college soccer and wish to represent an HBCU, the HBCU ID Camp is your golden opportunity. From 8 am to 5 pm on November 11-12, Houston Sports Park will transform into a hub for aspiring male and female soccer players. Coaches from HBCUs across the nation will be present to evaluate, scout, and offer valuable feedback. Moreover, they might even spot the next soccer prodigy to join their collegiate soccer programs. This camp is not just about honing your soccer skills but also a chance to connect with the HBCU soccer community. You’ll learn the ins and outs of what it takes to excel on the field and in the classroom, which is crucial for a college athlete. The HBCU ID Camp is an excellent platform to network with coaches, learn from experienced athletes, and take the first steps toward your college soccer journey. To secure your spot at this incredible event, don’t forget to register [here](insert registration link). Space is limited to 120 participants, so make sure to reserve your place before it’s too late. It’s time to turn your dreams of playing college soccer into a reality.

Scroll to Top
Search