By Dianne Anderson

An upcoming heart health information event is close to home for Rev. Chineta Goodjoin, who could not have imagined that her brother, recently diagnosed with congestive heart failure, may be experiencing what many doctors usually overlook in the Black community.

“Once I told him about ATTR-CM, he went back to his doctor, who said ‘You have the markers for this, and we never thought about testing on this.’ Lo and behold, he is being tested right now,” she said.

The rare heart condition called Hereditary Transthyretin Amyloid Cardiomyopathy is hardly mentioned or accurately diagnosed, and almost always impacts people of African descent.

“They have been misdiagnosed by doctors who are not taking this seriously,” said Rev. Goodjoin of New Hope Presbyterian Church in Anaheim.

On Sunday, June 25, everyone is invited to attend Voices of the Heart, an informative event from 4-5:00 p.m. The Zoom forum, will address how doctors may not know, or misdiagnose patients, typically of African or Caribbean descent.

Guest speaker, Dr. Icilma V. Fergus, Associate Professor of Medicine and Director of Cardiovascular Disparities at Mount Sinai Medical Center, will speak to the condition, and take questions from forum participants. Before her current position, Dr. Fergus served as Chief of the Division of Cardiology at Columbia University Harlem Hospital Center.

Rev. Chineta Goodjoin, New Hope Presbyterian Church

NBA Hall of Famer, Don Chaney, will also share his personal experience with ATTR-CM.

Pastor Goodjoin also applauds the efforts of the dedicated Black doctors with UCI PRIME LEAD ABC, which stands for Program in Medical Education Leadership Education to Advance Diversity: African, Black and Caribbean. She said they will continue working with the program to help bring life-saving information to the community.

“They will all be a part of this. It’s a real deal as far as wanting to spread the word for people to come to get knowledge and information to take back to their families and doctors,” she said.

In April, their church site sponsored and partnered with UCI LEAD ABC doctors and medical professionals for a community-wide health fair, that included UCI doctors, and the Orange County Health Agency.

She said they offered about 18 booths from mental health to nutrition to cardiovascular help.

“People without health care were there, we had dentists there. This is just another part of our justice and witness for advocating for healthcare for those who are marginalized, especially in the Black community in Orange County,” she said.

Dr. Martha Sosa-Johnson said that as the Health Ministry Leader at the church, is also excited about the upcoming program, an upcoming partnership with the community-based program, Voices for the Heart.

“Approximately 3% to 4% of the African American population may be carriers of the gene mutation,” she said, adding, “It is important to consider this gene mutation when someone of African American ancestry is diagnosed with congestive heart failure, especially if they are not responding well to traditional therapies.”

She said the common V122i gene mutation is found almost exclusively in individuals of African ancestry in the United States. The goal is to shed light on the rare, but important cause of congestive heart failure in the Black community.

The cause of the serious hATTR-CM is due to a mutation or changes in a gene passed down from a relative, affecting both men and women with symptoms that can begin as early as 50 years old, she added.

“As an Internal medicine physician, I’ve taken care of many patients with congestive heart failure. Black Americans are at higher risk of developing congestive heart failure and their clinical outcomes with heart failure are less favorable than Caucasians,” she said.

Dr. Candice Lucas, co-director of UCI PRIME LEAD ABC, said they continue to work closely with New Hope Presbyterian.

At UCI, the program is drawing more Black students into medical fields. Their last event for National Minority Health Month in April at the church brought out many medical professionals to provide one on one information and tests for the community.

Dr. Lucas is also a mentor for the health students of LEAD ABC, who participated in the event.

“A few of the scholars worked with the church on a health fair,” she said. There were a lot of different vendors, screenings for blood pressure and diabetes, cholesterol, an active space for kids and a lot of resources,” said Lucas, associate professor of pediatrics, MD, MPH.

The local church is taking the reins on hosting these events and partnering with communities at greatest risk for adverse health outcomes, which she said is crucial to spread evidence-informed recommendations for the prevention and treatment of disease.

“Community-led health educational sessions are truly vital, and creating trusted spaces for learning about health issues, whether rare or more common, can be life-saving for the attendees of the event and their loved ones,” she said.

For more information, see http://mynewhopepres.org/

To learn more about UCI PRIME LEAD ABC medical school, see https://medschool.uci.edu/education/medical-education/mission-based-programs/prime-lead-abc