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For those with sickle cell disease in rural Virginia, treatment options are sparse

Posted at 8:57 PM, Mar 30, 2023

RICHMOND, Va. -- According to the Virginia Department of Health, sickle cell disease impacts 1 in 12 African Americans in Virginia, yet the care available for both adults and children varies drastically depending on where you live in the state. This is especially true in the Tidewater area of Virginia where Newport News native Taylor Mickel is from.

The twenty-seven-year-old has battled with the disease since she was born, sometimes being hospitalized because of how painful some of her crises were.

"If I feel one come on and I know it's happening, ibuprofen first. If those don't help within the first 45 minutes for me, I need to go to the hospital," she said.

Sickle cell disease causes your red blood cells to become misshapen and break down, sometimes causing intense pain all over the body.

"I know my sickle cell is going to flare up the second my heart rate goes too high, the second I’m just over-exuding myself and not hydrated, it’s going to happen," said Mickel.

She was born and raised in Newport News, an area that Dr. Wally Smith with the Adult Sickle Cell Medical Home said has the highest population of people with sickle cell.

"Most of the patients with sickle cell disease live in the Tidewater region," said Dr. Smith. "There's no clinic with even 100 patients in the Tidewater region for adults. And adults now outnumber children two to one."

Mickel said sickle cell care during her childhood drastically differed from her adult care.

"The transition from CHKD to adult care though in Newport News is miserable," she said.

It's problem Mickle said has led her to not move back home after graduating from VCU.

"I'm not going back. I have a whole sickle cell team right now that knows that I do this, I have that, my blood works like this, this is how much of a dosage she’s taking, this is her pain tolerance," she said.

The need for more care and awareness around the disease has also been addressed through legislation. Tidewater native Delegate Candi Mundon King is among those advocating for change as she has a personal connection to the cause.

"I had this beautiful baby girl and got a call about three weeks after she was born that she had sickle cell and I was devastated," Mundon King said.

She proposed four bills in the 2023 session related to sickle cell care but none of them made it to the floor for a vote.

"Hampton Roads and rural areas of Virginia are deserts for hematology and adult patient's sickle cell care," said Mundon King. "We need to eliminate barriers, we need to provide the funding. And we really need to create a task force on sickle cell to really move the work forward."

It’s a reality Mickel said she hopes for as this disease can be deadly.

"I have a coworker who told me, she was like my first day of student teaching one of my closest friends who is your age passed away from sickle cell and that kind of hit really hard because I had just turned 27 last month," said Mickel.

Though difficult, she said the disease wouldn't stop her from living a life of laughter love and good music.

"It’s a blessing, I’m standing, I’m healthy, grant it I have some days but it's all good considering where I could be. It’s a blessing," she said.

Depend on CBS 6 News and WTVR.com for in-depth coverage of this important local story. Anyone with more information can email newstips@wtvr.com to send a tip.

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