“I had no idea I had sickle cell … until that moment”:  surprise diagnosis shows impact, range of blood disease

By Laura McGuire, American Red Cross  

In April 2013, Adrian Jones gave birth to a baby girl and named her Vanessa. Before her pregnancy, Jones was unaware she had a variation of sickle cell disease (SCD). During a prenatal visit, her doctor diagnosed her with hemoglobin sickle C disease (HbSC), a mild form of sickle cell anemia and recommended that she speak to a genetic counselor.

“I had no idea I had sickle cell SC until that moment,” said Jones.  

Jones, left, worried about her own health and about the health of her newborn or any future children. She knew directly the impact of SCD on a family: Jones’s mother was diagnosed with hemoglobin sickle S disease (HbSS), often known as sickle cell anemia.  

Throughout Jones’s lifetime, she remembers her mother’s frequent pain crises, hospitalizations and blood transfusions. Being the eldest of three children, Jones was often asked to help monitor her mother’s condition. She learned early on in life when and how to dial 911. She remembers seeing the pain her mother endured and the many “preparing for the worst” moments while coping with her mother’s health scares. Her mother passed away in June 2019.

Now, Jones deals with her own effects of SCD, including throbbing pain in her joints, especially her back, hips, knees, and ankles. “It feels like my joints are on fire, crushing and throbbing,” Jones said of her pain. Her condition does not require blood transfusions and she is able to rely on self-care to manage the pain. She keeps herself educated about the disease, uses diet supplements and stays hydrated.

(September is Sickle Cell Awareness Month. For important health information, resources and ways to get involved in the fight against this cruel disease, click here.)

Despite the differences in sickle cell and treatments, Jones knows blood transfusions are essential for people like her mother struggling with a form of the disease. That’s why she shares her whole family’s story, for awareness and to encourage more Black blood donors. From the Madison area, Jones shares with friends and colleagues another upcoming American Red Cross blood drive hosted by the Urban League of Greater Madison, slated for Sept. 17.

“It takes a village to take care of the community and we are taking care of our community by providing blood,” said Jones. “The first sickle cell blood drive in Madison [in April 2022] was beautiful. The support of the community made me think about how my mom sometimes needed to wait 24 hours for the right type of blood. That event provided blood so no one else would have to wait for it – it provided blood for other sickle cell patients allowing them to get to the next month or year of life.”

More than 100,000 people live with sickle cell disease nationwide, and the majority of patients are of African descent. The disease distorts soft, round blood cells and turns them hard and crescent-shaped, which can cause extreme pain. When hardened, the cells can get caught in blood vessels, potentially leading to stroke and organ failure. Blood transfusions are often used in treatment, and many individuals who are Black have distinct markers on their red blood cells that make their blood donations the most compatible match for helping patients with sickle cell disease. 

Sickle cell blood drives aren’t Jones’s only touchpoint with the mission of the Red Cross. As a child, Jones and her family evacuated from their home due to Hurricane Andrew. Jones’s family sought refuge at a shelter where she witnessed the Red Cross providing comfort, care, blankets, water, food and storm updates. Even though she was quite young, the compassion, hugs, and support given to her as a child by the Red Cross resonated with her deeply. “The thing I remember the most was how the Red Cross helped (me and my friends) find comfort and activities to enjoy before, during and after the storm.”    

In observance of Sickle Cell Awareness Month, donors are encouraged to participate in three local sickle cell blood drives:

Friday, Sept. 2 from 11 a.m. to 4 p.m. at MLK Library, 310 W. Locust St., Milwaukee – this blood drive is in honor of Demarus, who is a sickle cell warrior.

Friday, Sept. 9 from 1 to 6 p.m. at the American Red Cross, 2600 W. Wisconsin Ave., Milwaukee – this blood drive is in honor of Shanice, who is a sickle cell warrior.

Saturday, Sept. 17 from 9 a.m. to 2 p.m. at the Urban League of Greater Madison, 2222 S. Park St., Madison – this blood drive continues to bring awareness to the community by inspiring and promoting the campaign, Joined by Blood.

To help ensure all patients have access to the blood products they count on, diverse donors are urged to make an appointment by downloading the Red Cross Blood Donor App, visiting RedCrossBlood.org or calling 1-800-RED CROSS (1-800-733-2767). 

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