Maisha na Sickle Cell Anaemia

15/12/2025

🚨BREAKING NEWS: A man was just cured of sickle cell anemia!

A 21-year-old man just became the first person in New York to be cured of sickle cell anemia, marking a major breakthrough in the treatment of a disease that has afflicted millions globally.

Sebastien Beauzile underwent a groundbreaking gene therapy at Cohen Children’s Medical Center using Lyfgenia, a treatment that modifies a patient’s own bone marrow stem cells to produce healthy red blood cells.

The result: a life without the excruciating pain and complications that once defined his daily existence. “Sickle cell was like a blockade,” Beauzile said. “But now it’s just a wall I jumped over.”

Traditionally, sickle cell treatments have focused on managing symptoms, offering no true cure. Lyfgenia changes that paradigm. While it remains costly and complex, this one-time therapy is poised to transform outcomes for patients, especially within communities historically underrepresented in medical innovation.

The condition primarily impacts individuals of African, Mediterranean, and Middle Eastern descent, and researchers hope this success story will pave the way for broader access and future cures.

For the first time, gene therapy is not just experimental. It’s life-changing.

Source:
“Long Island man is first in New York history to be cured of sickle cell anemia.” CBS New York, 2025.

21/10/2025

09/10/2025

24/09/2025

𝐊𝐞𝐧𝐲𝐚 𝐂𝐡𝐚𝐦𝐩𝐢𝐨𝐧𝐬 𝐌𝐚𝐧𝐝𝐚𝐭𝐨𝐫𝐲 𝐒𝐢𝐜𝐤𝐥𝐞 𝐂𝐞𝐥𝐥 𝐒𝐜𝐫𝐞𝐞𝐧𝐢𝐧𝐠 𝐚𝐭 𝐔𝐍𝐆𝐀

Kenya has unveiled plans to make sickle cell screening mandatory in routine maternal and child health visits, a bold step aimed at ensuring no child is left behind. The announcement was delivered by Principal Secretary for Medical Services, Dr Ouma Oluga, who represented President Dr William Ruto at a high-level event on sickle cell disease during the 80th United Nations General Assembly in New York.

Dr Oluga decried the neglect of sickle cell disease, noting that millions of Africans continue to suffer in silence and that many die painful, preventable deaths. He highlighted the heavy toll in Kenya, where an estimated 14,000 children are born with the condition annually and up to 90 per cent die before the age of five.

The PS pointed to progress already made, including Kenya’s first National Guidelines for the Prevention and Management of Sickle Cell Disease (2021) and the Policy Guidelines for Infant Screening (2023). He said these measures had institutionalised early detection and lifesaving interventions.

To address financial barriers, Dr Oluga outlined the government’s creation of three new health funds — the Primary Healthcare Fund, the Social Health Insurance Fund, and the Emergency, Chronic and Critical Illness Fund — designed to guarantee routine care for sickle cell patients without the burden of out-of-pocket costs.

The meeting, organised by Africa CDC, brought together ministers, policymakers and global health leaders committed to tackling sickle cell disease across the continent.

02/09/2025

KENYAN WARRIOR BOWS

We are deeply saddened to announce the passing of Joanne Chazima Masivo of Joanne Chazima Sickle Cell Foundation.

A loving wife, mother, sister, and friend, Joanne touched countless lives through her compassion, resilience, and service. Her legacy will live on through her family, her work, and the many hearts she inspired.

10/08/2025

SICKLE CELL DISEASE CAN CAUSE SPLENOMEGALY IN SOME PATIENTS

SCD can cause splenomegaly, which is the enlargement of the spleen. In sickle cell disease, the abnormal sickle-shaped red blood cells can get trapped in the spleen, causing it to enlarge.
This can lead to splenic sequestration crises, where the spleen rapidly enlarges and traps red blood cells, potentially causing a dangerous drop in the body's red blood cell count.

A MORE DETAILED EXPLANATION

● SPLENOMEGALY IN SICKLE CELL DISEASE: The spleen is a vital organ that filters blood and removes old or damaged red blood cells. In sickle cell disease, the abnormal sickle-shaped red blood cells can get stuck in the spleen's small blood vessels, leading to inflammation and enlargement.

● SPLENIC SEQUESTRATION CRISES: This is a serious complication where the spleen suddenly enlarges, trapping a large number of red blood cells. This can lead to a rapid decrease in the number of circulating red blood cells (anaemia), which can cause symptoms like pallor, weakness, and tachycardia.

● CHRONIC SPLENOMEGALY: In some cases, the spleen may remain enlarged (chronic splenomegaly) even after a splenic sequestration crisis. This can be associated with complications like hypersplenism (where the spleen removes too many blood cells), an increased risk of infection, and potentially life-threatening splenic rupture or hemorrhage.

● PREVALENCE: While splenomegaly is common in young children with sickle cell disease, it is less frequent in adults. Some adults may develop splenomegaly due to complications like splenic sequestration crises or hypersplenism.

● CLINICAL SIGNIFICANCE: Splenomegaly in sickle cell disease requires careful monitoring. Regular check-ups, including monitoring spleen size, are important to detect and manage potential complications. In some cases, splenectomy (surgical removal of the spleen) may be considered to prevent or treat complications.

And remember, an enlarged spleen (splenomegaly) can contribute to a protruding belly in patients with sickle cell disease, particularly during splenic sequestration crises.
This occurs because the spleen, normally a small organ, can become significantly enlarged due to the trapping of sickled red blood cells within its blood vessels. This trapping, called splenic sequestration, causes the spleen to swell and can lead to pain and abdominal distention.

Have you experienced this, or do you know who has? What did it feel like?

💗 & 🌙
Bilqis

08/08/2025

SICKLE CELL DISEASE CAN AFFECT EYESIGHT

Sickled cells can block blood flow in the blood vessels in the eye. A blockage can occur in any part of the eye, but a blockage in the blood vessels in the retina (layer of tissue in the back of the eye that sends images to your brain) is the most common.
People with a blockage may not experience any symptoms and then suddenly experience vision problems, leading to permanent blindness.

SCD can affect virtually every vascular bed in the eye and can cause blindness in the advanced stages. The most significant ocular changes are those that occur in the fundus, which can be grouped into proliferative sickle retinopathy and non-proliferative retinal changes based on the presence of vascular proliferation. This distinction is important because the formation of new vessels is the single most important precursor of potentially blinding complications. Although various systemic complications of SCD are known to be more common in patients with the Hb SS genotype, visual impairment secondary to proliferative sickle retinopathy is more common in patients with the Hb SC genotype. There is also an increase with age in the incidence and prevalence rates of all ocular complications of SCD. It is therefore recommended that all patients with SCD undergo periodic ophthalmological screening from the age of 10 years.

MORE DETAILED EXPLANATION?

● RETINA DAMAGE: Sickle cells, which are abnormally shaped, can clog the blood vessels in the retina, leading to a lack of oxygen and nutrients.
● VASCULAR COMPLICATIONS: This blockage can cause retinopathy, where the blood vessels in the retina become damaged.
● PROLIFERATIVE SICKLE RETINOPATHY: In advanced stages, new, fragile blood vessels may grow (proliferate) on the retina, which can rupture and lead to bleeding (vitreous hemorrhage) and further vision problems.
● IMPORTANCE OF MONITORING: Due to the potential for vision loss, individuals with sickle cell disease should have regular eye exams to monitor for retinopathy and other eye complications.

In sickle cell retinopathy, blockage of blood vessels in the retina and choroid results in abnormal blood vessel growth and thinning of the retina. These physical changes and their consequences can impair vision.

SYMPTOMS

Patients with retinal involvement of sickle cell disease often do not have any eye symptoms. However, when symptoms are present, patients describe:

● Blind spots
● Sudden onset of floaters or blurred vision
● Flashes of light
● Loss of side vision or curtains

Each cell in the human body carries 2 beta-globin genes. The normal gene is adult haemoglobin (HbA). The 2 most common mutations causing sickle cell disease are called haemoglobin S (HbS) and haemoglobin C (HbC). The most
common combinations involving mutations are:

● HbSS disease, also known as sickle cell anaemia. This causes the most severe symptoms of sickle cell disease throughout the body. Vision loss is less common in patients with HbSS disease.
● HbSC disease is a less severe form of sickle cell disease affecting the body. This form tends to affect the retina more frequently, and patients have higher rates of vision loss.
● HbAS, also known as sickle cell trait. This does not usually present with eye symptoms. However, high eye pressure and low oxygen levels in patients can rarely lead to vision loss in patients with sickle cell trait.

EARLY DETECTION AND TREATMENT

Early detection of retinopathy allows for timely treatment, which may include laser treatment or surgery, to help prevent further vision loss.

HAVE YOU EVER EXPERIENCED THIS OR KNOW WHO HAS?
WHAT WAS IT LIKE?

Bilqis Chunene Ahmed