By Dianne Anderson

Nonstop running, busy with numerous community organizations had Joan Powell feeling wiped out, needing lots of extra rest. Maybe she was a little anemic – or so she thought.

She still remembers her doctor calling her to get to the ER. Her blood count was down to 5.5, risking a stroke or heart attack. Six months after a long needle bone marrow biopsy she got a diagnosis of Myelodysplastic Syndrome (MDS), sometimes called pre-leukemia.

“I was in the hospital at least once a month getting two units of blood because my count kept shooting down,” she said. “I still go in for transfusions. It doesn’t hurt, but it’s just a long process, for two units is six to eight hours.”

Other than shortness of breath and extreme tiredness, there were no symptoms, no pain. It is treatable. According to UC San Francisco, the only known cure for MDS is allogeneic blood and marrow transplantation, but not without complications.

Powell has the same issue as Robin Roberts of Good Morning America, who developed MDS from radiation and chemotherapy after breast cancer, which is in remission since her bone marrow transplant from her sister.

After her diagnosis, Powell curled up with an old teddy bear her mother gave her as a child. She didn’t know what to do, but she learned.

“They taught me how to give myself a shot to stimulate her bone marrow, and I hate needles,” she said. “I started giving myself injections in the abdomen three times a week. I’ve had this since 2014,” said Powell, President of Orange County Chapter of the National Council of Negro Women.

Each week, she does what she has to do. She goes to the doctor for her bloodwork, hoping for a normal count.

It comes back at an 8 or 9, but for most women, it’s 11 or above.

“I fight it, I can be home and be tired or go out and be tired, what’s the difference?” she said.

But things are improving. She was getting blood transfusions every month, and hasn’t had one since April, but she receives injections from her oncologist every 21 days to stimulate the bone marrow.

“Last time I saw him, he was going to increase the dose. With a disease of this type, you always have to try some things because it’s not a sure formula,” she said.

Financial pain is another side effect. The MDS drug costs $200,000 a year, and while she has insurance coverage, there are copays. With her numerous transfusions, she doesn’t ask where it comes from, she’s just grateful it’s there.

“I just say thank God,” she said. “There are shortages throughout the nation. I hate to say it, but some of these blood places don’t go into certain neighborhoods, even with blood they have stereotypes.”

For Dorian Archie, a Sickle Cell survivor, he said blood transfusions are important for the entire Black community because the need is great, but there are not enough donors.

Every six to eight weeks, Archie goes in for “red cell exchanges,” the removal of some Sickle Cells for healthy red cells. Each year, he has about a dozen transfusions, and, or red cell exchanges, but for other Sickle Cell patients, it could be a half dozen or more transfusions annually.

Archie, a compassionate assistant program manager with the Cayenne Wellness Center, organized several blood drives this year and soon to host his second blood drive with his fraternity, Kappa Alpha Psi.

Black males only make up about 3% of donations for the Red Cross.

“The Black community makes up the lowest donations and we are one of the highest populations in need of blood, whether due to diabetes, Sickle Cell disease, or other hereditary blood conditions, Lupus. The list goes on,” he said.

African Americans require a specific antigen with transfusions, which he said makes it critical that Black males step up to the task, and help with those biomarkers.

Especially when it comes to having a rare blood type, AB Negative or O Positive, he said it’s essential that those [antigen markers] are included in blood donations, and to get more people donating plasma on top of just giving regular blood.

It took him about three months to get all the Frat Brothers on board for donations, as he hosted back-to-back education sessions. Black women are also needed, but he said hemoglobin fluctuations can sometimes be an issue.

However, the needles can be a hard sell.

“It’s crazy, you’ve got 6 feet 250-pound guys with tattoos up and down their arms. They’ve gone off to war, but the idea of seeing a needle and a little blood makes their head spin,” he said.

He hopes for 40 slots open on the next drive. The last collection yielded 36 pints from 33 people, but he said that the Center hosts multiple events statewide, collecting hundreds, if not thousands, of pints annually.

Having Sickle Cell is a challenge, even in college, it was very hard. Every day was an ongoing battle just to get out of bed, he said. Many people get bogged down and stressed out with the regular rigors of life without chronic illness, but Sickle Cell has a big impact on joints.

“It can be a daunting thing to deal with it, and think about and live with every single day if you don’t have all the needed checks and balances and support to thrive while living with a chronic illness,” he said.

He credits his parents for providing that support system, and along with himself, acting as an advocate through the health system.

Archie, 34, said that every aspect of Sickle Cell is about living life with the illness and staying strong.

“I’ve been at every stage, I felt like I was only surviving and just getting by in the day-to-day battle struggle for me. Now I’m at a place where I feel like I’m thriving in life,” he said.

To learn more about MDS, see  https://www.ucsfhealth.org/conditions/myelodysplastic-syndromes/

To learn more, see  https://cayennewellness.org/