Call for Better Sickle Cell Care
By Lusaka, Zambia24 – (20-06-2026) --- People living with sickle cell disease can lead healthy, productive and fulfilling lives if communities better understand the condition, support affected families, promote early diagnosis and treatment, and work to eliminate stigma and misconceptions.
The call was made during a World Sickle Cell Day Commemorative Scientific Symposium and Patient Summit held under the theme: “Closing the Survival Gap: Equity in Sickle Cell Care.”
Speaking at the event, Dr. Mmamulatelo Siame said sickle cell disease should not be treated as a condition managed by hospitals alone, but as a shared responsibility that involves families, schools, caregivers and communities.
“We want to focus on our warriors, but also on the community because parents, brothers, sisters, teachers and friends all have a role to play,” she said.
Dr. Siame explained that sickle cell disease is an inherited blood disorder that affects haemoglobin, the protein responsible for carrying oxygen in the body.
She said the condition causes red blood cells to become sickle-shaped and less flexible, making it difficult for them to move through blood vessels and deliver oxygen effectively.
She noted that a child develops the disease when both parents pass on abnormal haemoglobin (HbS), while AA represents normal haemoglobin, AS the carrier state, and SS the disease form.
She said symptoms vary but often include severe pain episodes, swollen hands and feet in infancy, yellowing of the eyes, fatigue, anaemia and frequent infections.
She urged parents and caregivers to seek medical attention early when warning signs appear, warning that delayed diagnosis can lead to life-threatening complications.
Dr. Siame said the disease can affect multiple organs, including the brain, kidneys, liver, bones and eyes.
Complications may include stroke, kidney failure, liver disease, bone damage, eye problems and acute chest syndrome.
She identified dehydration, infections, extreme temperatures and stress as key triggers of painful crises.
She stressed that emergencies such as priapism must be treated immediately.
She added that children on treatment are now spending more time in school and less time in hospital.
She said real progress in sickle cell care depends on stronger health systems, early diagnosis, better access to treatment and public awareness.
“People with sickle cell disease can study, work and contribute meaningfully when they receive proper care and support,” she said.
She also highlighted mental health as a critical but often overlooked part of care.
She said patients and caregivers often face anxiety, depression and emotional strain.
Dr. Siame called for counselling, peer support and routine mental health screening to be included in sickle cell services.
She urged families, schools and health workers to work together to reduce stigma and improve patient outcomes.
She added that regular medical follow-up remains essential, even when patients feel well.
Meanwhile, leading Indian Hemato-Oncologist Dr. Narender Kumar Thota said advances in treatment are improving survival, but access remains a major challenge in low-income countries.
Speaking at the symposium organised with the Zambian Paediatric Association, Dr. Thota said sickle cell disease remains a major global health burden, especially in Africa.
He said hydroxyurea remains the most important and widely used medicine, reducing painful crises and hospital admissions, although many patients still do not receive it.
He said L-glutamine can also reduce pain episodes when used together with hydroxyurea under medical supervision.
Dr. Thota said bone marrow transplantation remains the only established cure for sickle cell disease.
He explained that the procedure replaces faulty blood-forming cells with healthy donor cells, with success rates now exceeding 90 percent in selected patients.
He added that gene therapy is emerging as a major breakthrough, using tools such as CRISPR to correct the genetic defect.
However, he noted that these advanced treatments remain extremely expensive and limited to a few centres worldwide.
He called for improved access, early diagnosis and more equitable healthcare systems, particularly in Africa.
She said she grew up knowing her condition but still lived a normal childhood, balancing school and frequent hospital visits.
However, she said misunderstanding and stigma often followed her, even in academic spaces.
She said acceptance was a turning point in her journey.
“Acceptance does not remove pain, but it helps you face it and take control of your health,” she said.
She encouraged patients to seek knowledge about the disease and connect with others facing similar experiences.
She stressed the importance of medication adherence, warning that inconsistent treatment can lead to severe complications.
Dr. Mwilwa advised young people to pursue their dreams while managing their health responsibly.
She urged patients to speak openly about their condition in schools and workplaces to reduce misunderstanding and pressure.
She also encouraged financial planning for medical emergencies, given the unpredictable nature of the disease.
She said sickle cell disease should not be seen as a limitation, but as a condition that requires discipline, resilience and support.
She shared her personal experience caring for her son, saying early recognition of symptoms and quick medical intervention saved his life during a stroke.
“It was a moment that showed me how important timing and skilled care are,” she said.
She stressed the importance of nutrition, hydration and strict adherence to treatment.
She warned against sharing medication and urged caregivers to follow medical guidance closely.
Mwansa called for improved access to treatment, blood supplies and research, noting that advanced treatments remain out of reach for many families due to high costs.
She encouraged blood donation and stronger collaboration among stakeholders.
She said people living with sickle cell disease are intelligent, capable and deserving of equal opportunities in education, work and society.
She urged communities to replace stigma with understanding.
She said stronger systems are needed to ensure patients not only survive, but live with dignity and hope.
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