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Millennials ‘pushing past the pain’ of sickle cell

by Cathy F. Hart, Special to The New Tri-State Defender

Sickle cell “warrior” Juveiane Richards lives with the inherited disease that he knows from experience can deliver episodes of pain known as pain crisis. Often, you can find him in the company of caregiver Ashton Davis at Carpenter’s House at 35 West Brooks Rd.

Richards and Davis, a published author and college student, were chilling last week as Michael A. Jackson, an advocate providing program support for The Sickle Cell Foundation of Tennessee, started giving a tour of the house that Kenneth Carpenter and his wife, Dr. Terri Carpenter, donated to the foundation five years ago.

After the tour, Richards and Davis talked with The New Tri-State Defender about their perspectives and experiences living with and managing sickle cell, which the Centers for Disease Control reports is particularly common among those whose ancestors came from sub-Saharan Africa; Spanish-speaking regions in the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece and Italy.

At Carpenter’s House, Michael A. Jackson, an advocate providing program support for The Sickle Cell Foundation of TN, talks about his involvement. On the wall is a portrait of the late Dr. Trevor K. Thompson, co-founder of The Sickle Cell Foundation of Tennessee. (Photo: Karanja A. Ajanaku)

September is national Sickle Cell Awareness Month and the two are part of a crew of millennials planning for two important events – Sickle Cell Awareness Day at the University of Memphis on Sept. 25 and the 11th Annual 5K Mark Walden Memorial at AutoZone Park on Sept. 29.

It doesn’t take long to detect that Richards and Davis have learned how to talk with each other. They are in lockstep agreement about the community need for a broader understanding of sickle cell and the challenges it presents sickle cell warriors and their advocates

Davis is the caregiver for sickle cell warrior Anthony Smith, a college student. He said the warrior-caregiver dynamic takes trust on both sides, adding that the caregiver must be intuitive, selfless and committed to learning about the warrior and the warrior’s triggers.

The conversation was only a few minutes old when Smith showed up and joined in.

“It takes energy to deal with sickle cell,” Smith said. “It takes a lot of mental to deal with sickle cell.”

As the flow led deeper into the importance of educating the community on all aspects of living with both sickle cell disease and the sickle cell trait, another sickle cell warrior, Tabatha Marmon, a medical professional, arrived at Carpenter’s House for a planning meeting. Familiar with the vibes, she connected with the conversation.

“Warriors must push through the pain and take care of their bodies,” she said, at one point reflecting her agreement that many times the “warriors” are smiling through excruciating pain for which some people have no point of reference.

It was a conversation also accented by excitement and a sense of gratitude for progress in the availability and dissemination of information about sickle cell, advancements in treatment and improved quality of life for sickle cell warriors. The group noted the benefits stemming from the progressive work by sickle cell care providers such as St. Jude Children’s Research Hospital, Methodist Hospital, Regional One Health and the University of Tennessee Health Science Center.

Research shows that sickle cell warriors are living longer, with a national median life expectancy of 42 to 47 years. Celebrities such as Tionne “T-boz” Watkins, Larenz Tate, Tiki Barber and Prodigy are all sickle cell warriors working to inform the community through advocacy, education and resources.

Richards, Davis, Smith and Marmon are all between the ages of twenty-five to thirty-three. They are at “home” at Carpenter’s House, which provides resources and connection to social services beneficial to warriors, their families, caregivers and advocates.

On a wall in the front room is a framed Tri-State Defender article from 2013 under the headline “Community help needed for sickle cell group home.” That’s the year the house became The Sickle Cell Foundation of Tennessee Carpenter’s House.

Kenneth Carpenter, founder of the 5K Sickle Cell Walk/Run and chief operating officer of Carpenter Primary Health Care, said he was pleased to donate the house and was hopeful that it would be used to uplift those in the sickle cell community in Memphis.

“The mission of the house is being fulfilled and that was our purpose for giving the house,” he said.

In a manner, the house is a testament to the vision of the late Dr. Trevor K. Thompson, the sickle cell warrior who co-founded The Sickle Cell Foundation of TN with his wife, Cherry Whitehead-Thompson. The vision involved transitional support for individuals living with sickle cell.

Thompson died Nov. 10, 2016. He was 48.

(Visit The Centers for Disease Control website: https://www.cdc.gov/ncbddd/sicklecell/data.html/.)

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