Originally Published: 27 JUN 23 11:37 ET

Updated: 27 JUN 23 11:49 ET

By Sharon Browne-Peter, CNN

(CNN) — Living with sickle cell anemia, each day feels like a silent battle against my body’s limitations.

Diagnosed with the heritable blood disorder in the womb before I was born, I’ve never known a life without persistent fatigue, unrelenting body aches and ruthless, sudden bouts of pain.

The first time that pain put me in the hospital I was 2 years old. It struck in the middle of the night, jolting me awake. Always prepared, my mum, a Nigerian-born solicitor navigating life in Britain, kept an overnight bag packed.

In the 1990s, sickle cell was still inaccurately labelled a Black disease and was overlooked by many health professionals. My mum stood as my advocate, pushing for adequate pain relief and urging doctors to pay more attention to me.

As a kid, I wanted to join dance classes and swim but fearing another hospital visit, my mum made me take more sedate drama and music activities. It didn’t matter how much I wanted to feel better, be with my friends and embrace being a kid. The frequent bouts of ill health just didn’t allow me to be like everyone else.

It wasn’t until I received regular blood transfusions just before I became a teen that my life changed for the better. While the race of the blood donor and recipient typically doesn’t matter as long as their blood types match, ethnically-matched blood offers the best treatment for people with sickle cell. And there aren’t enough Black blood donors in the United Kingdom and the United States.

Over 100 million people have sickle cell disease

Sickle cell disease is a global health issue, with around 66% of the 120 million people affected worldwide living in Africa, according to the World Health Organization. It affects about 100,000 people in the US and about 14,000 people in the UK.

It’s more common in areas of the world, such as Sub-Saharan Africa, where malaria is prevalent, and researchers believe that the genetic mutation that causes sickle cell disease has a protective effect against malaria. Most sickle cell patients in the US and UK have African ancestry.

Sickle cell disease fundamentally alters the shape of red blood cells from the typical round and concave shape to rigid, sickle-like forms, according to the US Centers for Disease Control and Prevention. These malformed cells can block blood flow, causing a vaso-occlusive crisis, where tissues are starved of oxygen. This disruption is the main reason for hospital visits among patients, with pain being the hallmark symptom. Blood transfusions help increase oxygen-carrying capacity and reduce complications.

I had assumed that I needed a match for my O positive blood, which is shared by 35% of the UK population. However, my doctor told me it’s not that simple.

In addition to the commonly known blood types A, B, O, and AB “there are over 44 blood group systems, containing a total of 354 different red cell antigens, some of which are exclusive to particular racial and ethnic groups,” Dr. Arne de Kreuk, a consultant haematologist specialising in haemoglobin disorders at King’s College Hospital in London, told me. He’s been treating me since 2021.

The pattern of my extended blood group is more likely to be found among blood donors of African heritage. That’s a challenge because the American Red Cross and the UK’s National Health Service both report that blood donations from Black individuals remain disproportionately low.

“For individuals with sickle cell, what we found is that you need to match for more than (blood types A, B, O, and AB). So there are other things sticking out on the red cell surface with names like Kell, Duffy and E, and these need to get matched also,” said Dr. Lewis Hsu, a pediatric hematologist and chief medical officer for the Sickle Cell Disease Association of America.

“In order to match those, you need a larger group of donors to choose from,” he added.

The American Red Cross said it encourages all eligible individuals, regardless of race, ethnicity or health conditions like high blood pressure or diabetes, to donate and help ensure a diverse blood supply for patients in need. The shortage of Black blood donors may stem from a longstanding mistrust among some Black people of health care systems and common misconceptions about blood donation eligibility.

The UK’s National Health Service said it faced a similar problem.

“We don’t have an overall shortage of blood donors. We currently collect enough blood overall to meet the needs of patients across England. However, the specific shortage of donors of Black heritage means that sickle cell patients often don’t get the best-matched blood,” said Rachel Newton, an NHS Blood and Transplant (NHSBT) representative.

The American Red Cross has launched a national initiative to increase the number of Black blood donors, collaborating with national and local Black organisations to expand blood donation opportunities in Black communities. The Red Cross Sickle Cell Initiative, which started in 2021, resulted in 26,500 new African American blood donors in its first year, the organization said.

In the UK, the Community Grants Programme created partnerships to launch campaigns specifically targeting Black heritage donors. The collaboration with the Marvel Studios movie, “Black Panther: Wakanda Forever” as part of the “Not Family, But Blood” campaign, was designed to recruit more Black blood donors.

Over its three-month duration in 2022, the campaign resulted in 7,800 people of Black heritage registering to donate, a 110% increase compared to the previous three months, according to NHS Blood and Transplant.

Sickle cell is a debilitating disease

As a Black woman dealing with a debilitating disease, I had to learn how to establish my life at my own pace and on my own terms. The pressure of assessments, deadlines and attending classes often caused me to neglect my health while studying. I struggled to keep up with everyone else even though I looked perfectly fine.

I remember when I secured my first internship, focused on urban planning. I was the only intern, and within the first two days, there were numerous activities I found difficult to keep up with. Unfortunately, this backfired, and I ended up in the hospital on the second day. My entire body was in pain, and I required emergency care. After receiving a blood transfusion, I was able to go home, and felt a mixture of relief and depression.

I reluctantly explained my condition to my supervisor and what I thought was my need to discontinue the internship. To my surprise, I received a short email saying, “Sorry to hear you have been unwell,” along with an offer to reschedule. Once I had recovered, I planned to return to the internship. On the train heading back to the office, I ran into a colleague who asked where I had been. I shared everything with her, and her response was, “Yeah, managers won’t like that. You’ll seem too unpredictable to them.”

It was the first time I had been called unpredictable, and I thought she was right.

Discouraged by my experience during the internship and wanting to be a part of a larger conversation surrounding diversity and inclusion, I became an advocate for sickle cell and learned the skills to become a journalist.

The seemingly small act of donating blood has a lasting impact on those in need. It has strengthened me so that I can become a journalist. I wouldn’t be where I am today without the donors and hardworking medical professionals who have supported me.

While the US and the UK are making strides in increasing the number of Black heritage blood donors, it’s vital to continue raising awareness and encouraging more people to donate, ultimately ensuring a diverse blood supply for patients in need.

Blood donors leave a lasting legacy in medical history. Their selfless actions, often overlooked, have a profound impact on the lives they touch. Their contributions are treasured, celebrated, and forever honoured by individuals like me.

To donate blood in the UK, https://my.blood.co.uk/your-account/pre-registration

To donate blood in the United States, https://www.redcross.org/give-blood.html