The Sickle Cycle (2026)

12/11/2025

We have a new addition to the Sickle Cycle Family! The instrumental to this post is one of the songs that keeps me focused on living a purposeful life inspite of storms,challenges, and sickle cell complications that may appear to be roadblocks. The lyrics state: May your struggles keep you near the cross.
And may your troubles show that you need God.
And may your battles end the way they should.
And may your bad days prove that God is good.
And may your whole life prove that God is good.

Thankful to God for the pregnancy journey, delivery, and recovery especially as a sickle cell warrior. Sickle cell is complicated and pregnancy does not provide an exemption. Women with sickle cell disease are at higher risk of problems during pregnancy. Some sickle cell risks are linked with changes that occur in the body due to pregnancy, including: Raised metabolism, Higher hormone levels that raise the risk of blood clots, Serious anemia, Additional pain crises. If you are pregnant or planning for pregnancy, find a team of a healthcare providers who specialize in high-risk pregnancies and have experience with patients who have sickle cell disease. Meet with the team throughout your pregnancy to manage your risks.

30/09/2025

Closing out Sickle Cell Awareness Month with a community event hosted by in Baltimore, MD with sickle cell warriors and their families. So many vendors and resources at the event! If you are in the DMV area, get involved with MSCDA Org to learn about the ways you can help warriors in the community.

08/09/2025

Happy Sickle Cell Awareness Month! Yesterday, , founder of , hosted an amazing event filled with education, networking and awareness from Sickle Cell patients and providers regarding reproductive and maternal health care. Did you know the maternal mortality rate in deliveries among people with SCD was 26 times greater than in the non-Black control group and more than 10 times greater than among Black pregnant people without SCD? thank you for being an example of turning your medical failure into service for the sickle cell community. Thank you for hosting an amazing event including so many legends pictured and not pictured 🙃.

12/06/2025

For D’Asia Jackson, every day is a guessing game over whether excruciating pain will upend her life.

The 28-year-old medical assistant was born with sickle cell disease, an inherited blood disorder. It can cause blood clots, organ damage and excruciating pain, which can worsen during the menstrual cycle. “Pain-wise, I always describe it as like being hit by a Mack truck,” Jackson said. “When I know my period is coming, I know pain is probably right behind it.” Over the last 10 years, Jackson has worked with her doctors to try a variety of contraception options to get her symptoms under control, from the Depo-Provera shot, a hormone injection given every three months, to an IUD to different forms of birth control pills. According to Jackson, none of them helped. Some made her periods even worse. At times, she’s ended up in the hospital needing iron infusions due to loss of blood. Doctors don’t know how to manage her symptoms. “The lack of education on sickle cell is very frustrating,” she said. “I go into hospital stays having to educate doctors and nurses.” Now, women like Jackson are worried that lack of knowledge, particularly about how contraception affects their conditions, could get worse. In April, a small team that compiled information into what some consider the country’s “contraception bible,” a set of guidelines used by physicians to assess which types of birth control are safe for their patients, was fired from the Centers for Disease Control and Prevention as part of mass layoffs from the agency. The eight-person team was responsible for evaluating research and recommending birth control methods for patients with various conditions, from sickle cell disease, kidney disease and lupus to those at risk for HIV. The guidelines, called the U.S. Medical Eligibility Criteria for Contraceptive Use, provided the latest research for doctors, including an app that recommended which contraceptive methods were safe. The updates included new recommendations for people with sickle cell disease, finding that combined hormonal contraception presents an “unacceptable health risk” due to patients’ risk of life-threatening blood clots.

17/03/2025

New York resident Sebastien Beauzile was treated with a pioneering new gene therapy approach called Lyfgenia, developed by biotech company Bluebird Bio. Mr Beauzile received the treatment on December 17th 2024 and has not had any symptoms of sickle cell anemia since, leading his doctors to believe that the treatment has likely cured the disease. Previously, people with sickle cell anemia have been mostly treated with therapies which can control, but not cure the disease. Some people have been cured by giving them bone marrow transplants from external donors, normally a close relative without sickle cell anemia, but the procedure does not always work, comes with a host of side effects and a risk of dying. According to the National Institutes of Health, about 1 in 20 children under 16 receiving bone marrow transplants for sickle cell anemia have died, and 1 in 10 of people 16 years or older. Lyfgenia works by extracting the patient’s own blood stem cells, genetically modifying them using a virus to paste copies of functional hemaglobin into the cells and then giving the patient chemotherapy to clear out the old, dysfunctional cells before infusing the new, modified ones back into the body. The red blood cells then produced from the transplanted, modified blood stem cells are then completely normal. Mr Beauzile is not the first person to be successfully treated with Lyfgenia in the U.S. Lyfgenia and another genetic-modification based cell therapy for sickle cell anemia, Casgevy (Vertex pharmaceuticals) were both FDA-approved in late 2023 for the treatment of sickle cell anemia in patients 12 and older, following impressive clinical trial results. In the Lyfgenia trial which led to the drug’s approval, 88% of 32 patients treated with the therapy ranging in age from 12 to 50 years old had complete resolution of their symptoms between 6-18 months after receiving the drug. Lyfgenia is priced at $3.1 million per treatment, whereas Casgevy costs $2.2 million.

20/12/2024

A three-year-old boy is cured today thanks to the special care he received at UPMC Children’s Hospital of Pittsburgh. Leon Johnson received a bone marrow transplant on May 16, 2024, after being diagnosed with sickle cell disease one week after being born. His mother, Stacy, delivered twins in 2021. Leon and his sister, Leigh-Marie, were born just two minutes apart.

“I was aware that I had this sickle cell trait, but their father was not aware that he had the trait. They do the newborn screenings now for all children, and that’s how we found out that he had sickle cell disease,” Stacy said. “He was in the NICU still. So, after he got released from the NICU, one of his first appointments was to go to hematology and to be put on medication and to start getting educated on what sickle cell disease is, what version of sickle cell he had, which was, SS, the most severe (version) for what they told us of sickle cell.”

Stacy said before Leon’s bone marrow transplant, he couldn’t do the same things most three-year-olds do, like playing outside, visiting the park, trick-or-treating, and spending quality time with his sister.

“We had to try to isolate him as much as possible to keep him from getting sick. There [are] certain instances or situations that can trigger a sickle cell crisis or a pain crisis, and that is changing from warm to extreme cold, like you can’t do the cold playing outside, when it’s hot without taking breaks to get fluids, if it’s too humid outside, too hot, the season’s changing,” Stacy said. Leon’s family got the good news about six months ago that Leon could get a bone marrow transplant.

“We found out about a month after blood work and such, that he’s officially cured of sickle cell, and after he got his three-month workup again, no sickle cell,” his mother said.

Stacy said Leon is experiencing what they call “Leon’s firsts.”

06/12/2024

Nearly one year ago, the Food and Drug Administration (FDA) approved two new gene therapies for the treatment of sickle cell disease. The Sickle Cell Disease Association of America Inc. (SCDAA) is pleased that the manufacturers of these two FDA-approved gene therapy treatments have entered into agreements with the Centers for Medicare & Medicaid Services (CMS) to participate in the Cell and Gene Therapy (CGT) Access Model. These cutting-edge treatments are poised to make a difference in the lives of many sickle cell warriors, but their high price tags are a barrier to access. The CGT Access Model is a promising effort to reduce cost for these potentially curative therapies for eligible individuals, allowing more patients to benefit from these significant advancements in treating diseases. According to an announcement from the Department of Health and Human Services, the model “will test outcomes-based agreements for cell and gene therapies, with the aim to improve health outcomes, increase access to cell and gene therapies, and lower health care costs.” We are also heartened to see that the model will provide fertility preservation for patients, marking an important acknowledgment of quality-of-life standards for our community.

The Model will launch in January 2025, and all 50 states may choose to begin participation anytime between January 2025 and January 2026. SCDAA looks forward to working with our community-based organizations and other stakeholders to advocate for state enrollment. The CGT Access Model will provide crucial support to patients where available, and we encourage full participation across the country.

19/11/2024

Afrotech 2024 provided new information and there is one in particular that caught our eye, Sickle Sense. Sickle Sense does more than just provide generic health tips. Sickle Sense is a fleet of software services (distributed system, application, and data pipeline), all designed to provide a comprehensive solution for individuals to manage their sickle cell disease in the form of a web application. Every component is thoughtfully crafted to empower fellow warriors living with Sickle Cell to take control of their health and life. SickleSense leverages web crawling, semantic search, and retrieval augmented generation (rag) to deliver personalized recommendations and predict potential crises based on user-specific health data collected, all at the click of a button. This proactive approach empowers users to take charge of their health by anticipating issues before they arise, without the need for manual data entry like other platforms. Collecting a comprehensive health history improves personal care, enhances communication during medical consultations, aids the Sickle Sense A.I. services in making accurate suggestions, and ensures that in the event healthcare providers request patient data, they can have a complete view of the a users very own Sickel Cell history.

01/10/2024

The company announced it was voluntarily recalling Oxbryta and ending all active clinical trials and expanded access programs for its key ingredient, voxelotor. Pfizer explained that the decision was made “based on the totality of clinical data that now indicates the overall benefit of OXBRYTA no longer outweighs the risk in the approved sickle cell patient population.” The company said the data suggest the treatment can cause “an imbalance in vaso-occlusive crises and fatal events which require further assessment.” Pfizer noted it has advised regulators about the findings and recall.

Aida Habtezion, Chief Medical Officer and Head of Worldwide Medical and Safety at Pfizer, advised those taking Oxbryta to contact their doctors to discuss alternative medicines while the company continues to investigate.

16/09/2024

Sickle Cell 5k walk/run is always a good time. Great people, vendors providing educational resources, and free testing for sickle cell disease!

04/09/2024

Thank you for kicking off sickle cell awareness month by hosting an event shining the light on sickle cell warriors living well with the inherited blood disorder. Living well means that we have learned lessons to help us navigate our life better (as much as possible) with doctor appointments, sickness, and treatments. As a panelist, I’m grateful for the opportunity to learn from other warriors. We are stronger than we think and powerful beyond measure.

12/08/2024

Sickle cell disease affects more than 20 million people worldwide and can be a devastating condition. The inherited blood disorder affects the hemoglobin that carries oxygen through the body.

The genetic link between sickle cell disease and malaria is a story of how our genome adapts to the environment. Humans evolved in Africa 300,000 years ago. And at one point the Sahara desert was a big glacier. But when it melted, Central Africa became much warmer, creating an ideal habitat for mosquitoes. About 50,000 years ago, those mosquitoes, which initially infected primates, began to infect humans.

From time to time, humans have spontaneous mutations in our genes. And some 20,000 years ago, one of those mutations—the mutation for sickle cell disease—happened to be protective against malaria.

If you have one copy of that sickle cell mutation, hemoglobin-S, you are a carrier. You will not become sick from sickle cell disease, and you‘ll be more resistant to malaria. But if you have a double copy, one from each parent, you have sickle cell disease.

As Africa’s population evolved, those without the single mutation would often die of malaria, and those who had two copies of the gene would die of sickle cell disease. That’s why the single mutation became extremely common in Africa as populations settled, became more agriculturalist, and expanded.

The Sickle Cycle

12/11/2025

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20/12/2024

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