Weekly Spotlight - 31.10.24

Community Voices

_{Laurel Brumant-Palmer}

Today's community story is from Laurel Brumant-Palmer, who shares her lived experience with Sickle Cell through her innovative artwork.

"I am proud to stand here today and say: I am an artist with sickle cell, and I am a person with sickle cell who is an artist"

Growing up, Laurel’s life was a constant shuffle between school and hospital. Sickle cell disease brought numerous health challenges: pneumonia, kidney stones, the removal of her gallbladder and spleen, papillary necrosis, avascular necrosis, and even a hip replacement. These experiences battered her both physically and mentally, eroding her confidence and self-esteem. The feeling of being different was a constant shadow.

Sickle cell disease is relentless, but Laurel found solace in art. It became her private therapist, a way to cope with life’s challenges. Art is her happy place, lifting her spirits when she’s down. While many with sickle cell suffer from depression, her art transports her to another world, soothing and calming her.

Today, Laurel proudly says, “I am an artist with sickle cell, and I am a person with sickle cell who is an artist.” Her journey has been tough, but it has also shaped who she is. Through art, she has found a way to express herself and find joy despite the hardships.

View Laurel's portfolio here or reach out to Laurel find out more

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In the News

One Year Since MHRA Approved Casgevy

Nearly a year ago, the UK made headlines by becoming the first country to approve a gene-editing treatment for inherited blood disorders. The therapy, known as Casgevy, utilizes CRISPR technology to treat conditions like sickle cell disease and beta thalassaemia. Approved by the Medicines and Healthcare products Regulatory Agency (MHRA), Casgevy has since demonstrated remarkable success in clinical trials, significantly reducing symptoms and the need for blood transfusions. This groundbreaking advancement has brought new hope to patients and represents a significant milestone in the field of gene therapy.

AND017 Receives FDA Orphan Drug Designation for Sickle Cell Disease

On October 25, 2023, Kind Pharmaceutical announced that their drug AND017 received the FDA’s Orphan Drug Designation for the treatment of sickle cell disease (SCD). AND017 is a first-in-class hemoglobin elevating agent designed to treat multiple anemia indications, including SCD. This designation provides incentives such as tax credits and potential market exclusivity, highlighting the urgent need for new therapies for SCD, which disproportionately affects Black and African American patients. Early clinical trials have shown promising safety and efficacy results, offering hope for a novel and effective treatment option for those living with this challenging condition.

Managing Sickle Cell Pain: Effective Home Strategies

Oluwatosin Adesoye shares strategies for managing mild to moderate sickle cell pain at home, emphasising rest, hydration, and avoiding triggers. She advises using medications under medical guidance and highlights the importance of recognising when to seek hospital care. Her approach aims to improve quality of life for patients.

Mauritania's Sickle Cell Survey: A Step Towards Better Health Control

Mauritania's first sickle cell prevalence survey, supported by NGO Sant Sud, revealed 0.6% of infants have the disease. Conducted across seven regions, it trained healthcare workers and highlighted the importance of screening during immunisation days. This initiative aims to improve disease control and advocate for national strategies.

Sickle Cell Disease Study Reveals Key Patient Treatment Patterns and Insights

The study on sickle cell disease, funded by Novartis, analysed 1,665 patients in the GRNDaD registry. It focused on treatment patterns and characteristics, aiming to improve care. The observational study included all genders, with no healthy volunteers. The research highlights the importance of disease-modifying therapies for patients.