An estimated 100,000 people in America have sickle cell disease (SCD), a genetic blood disorder that affects red blood cells’ ability to travel throughout the body and deliver oxygen to organs.
People with SCD often face regular crises of severe body pain, organ damage, and a shortened lifespan.
The condition disproportionately impacts African Americans, and many online communities consider this in their advocacy efforts that aim to reduce stigma a
The Trends Section provides an overview of some of the most recent and relevant topics that relate to particular health conditions.
It features a selection of the topics that have the fastest growing Google search interest across the last three months, and reflects the inquiries of patients, healthcare providers, scientists, and others who are invested in the topic.
This is valuable to understand people’s interests and concerns at the present moment, and often include the U.S. states that have the highest interest in a topic.
Quilt.AI brings these trends to life through an analysis that incorporates both cultural and scientific lenses.
Search interest for Forma Therapeutics grew 451% over the last 3 months, from August 2022 to October 2022.
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The 'Believe it' campaign launched by Forma Therapeutics in collaboration with the Sickle Cell Disease Association of America (SCDAA) aims to spread awareness about sickle cell disease (SCD) [1], and likely led to an increase in searches for Forma Therapeutics in September and October as people sought more information related to the campaign.
The campaign have given patients more resources and knowledge about SCD and SCDAA, which can be beneficial in helping them manage the disease. It also serves as a reliable information source for these patients.
Cellectis is a biotechnology company that specializes in gene editing platforms. They presented their TALEN® gene editing technology at the European Society of Gene and Cell Therapy’s (ESGCT)29th Congress, [1] which has generated much interest online over the past 3 months.
The pre-clinical data further supports the use of the technology to target genetic diseases, specifically with the potential to correct a faulty mutation that cause sickle cell disease, offering a more effective and long-lasting treatment option compared to current therapies.
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Search interest for Cellectis grew by 451% over the last 3 months, from August 2022 to October 2022.
Search interest for Aplastic Crisis grew by 89% over the last 3 months, from August 2022 to October 2022.
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An aplastic crisis is a rare complication of sickle cell disease that occurs when the bone marrow suddenly stops producing red blood cells, leading to a decrease in the body's hemoglobin levels and resulting in anemia and severe fatigue. This can happen due to an infection or other underlying condition [1].
Publications and articles on Aplastic Crisis, like "Drug therapy in patients with severe forms of sickle cell anemia" [2], have likely increased interest in finding information on the topic from August to October.
It’s important for people to have knowledge about aplastic crisis as it is a rare but potentially life-threatening complication of sickle cell disease.
ertex Pharmaceuticals and CRISPR Therapeutics announced that the FDA approved the rolling review of exa-cel for the potential treatment of sickle cell disease.
Vertex and CRISPR formed a strategic research partnership in 2015 to develop potential new treatment using CRISPR/Cas9 technology[1]. CRISPR/Cas9 works by making precise cuts in DNA, allowing the natural DNA repair processes to take over [2]
The rise in search volume for this therapy in October could be due to the announcement from CRISPR Therapeutics as patients, healthcare professionals, and researchers are eager for updates on treatments for sickle cell disease.
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Search interest for CRISPR Cell Therapy grew by 235% over the last 3 months, from August 2022 to October 2022.
Search interest for Sickle Cell Disease by 102% over the last 3 months, from August 2022 to October 2022.
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Gene therapy for sickle cell disease involves introducing a functional copy of the sickle cell hemoglobin gene into a patient's cells to replace the mutant gene responsible for causing the disease. This is typically done using viral vectors to deliver the healthy gene into bone marrow stem cells, which then produce normal hemoglobin and ameliorate the symptoms of the disease. The goal of gene therapy is to provide a permanent cure for sickle cell disease by correcting the genetic defect that causes the disease. [1]
Gene Therapy promises early results through clinical trials even though the technique is experimental. Gene therapy has managed to attract a wide range of attention in the US.
The Culture Section highlights emerging cultural trends, new products, and notable dialogue about a variety of health conditions. The purpose of this section is to zoom in on what has been happening within the cultural and professional landscape of a particular health condition–stories that are often missed by quantitative searches.
By featuring influential social media items, patient discourse, professional dialogue, product innovations, and impactful news items, this section illuminates the lived experiences of many patients, while also providing a snapshot of the developments happening around them.
Here, Quilt.AI offers a detailed and nuanced perspective of what is new and what is meaningful.
The hashtag #sicklecellwarrior has gained significant attention on TikTok with over 50 million views. Individuals who identify as #sicklecellwarriors share their daily struggles with the disease and raise awareness to help other patients remain strong during treatment.Topics such as the initial shock of being diagnosed, frequent hospital admissions, changes in diet and food, and the episodes of pain associated with sickle cell disease are commonly discussed. Parents of children with sickle cell disease proudly share their kids' resilience in handling the painful crises of the disease at a young age and remind other parents to remain hopeful and supportive on the journey.
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This online community of almost 5.5K followers on Instagram (@sicklecellspeaks) focuses on advocacy and support. Despite the fact that SCD is an inherited genetic disorder, many of those with SCD feel that their condition is stigmatized in US society. One of the goals of Sickle Cell Speaks is to address some of the misconceptions about SCD (e.g. that it is contagious, that people with the conditions are drug addicts). Sickle Cell Speaks regularly features personal stories of people living with the condition to emphasize how they found strength, and how they navigated the condition’s many challenges. Their page has a link to their website which offers practical information and resources such as local events, support, and guidance in finding a specialist. This online community offers patients a glimpse into the lives of others with SCD, thus normalizing a lot of their shared experiences.
Oxbryta (voxelotor) is an oral drug that improves oxygen flow for sickle cell disease patients by increasing hemoglobin's affinity for oxygen, reducing sickling and destruction of red blood cells, and ultimately addressing the primary pathologies faced by SCD patients.
In August 2022, Pfizer has acquired Global Blood Therapeutics, a biopharmaceutical company focused on treating sickle cell disease (SCD) and its marketed sickle cell disease drug, Oxbryta [1]. The acquisition opens a path to further development of treatments for SCD.
New studies and the Pfizer-GBT transaction have generated discussions on social media about the drug's efficacy, safety, and its ability to improve the lives of patients.
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Scientists at Aberystwyth University have identified a specific chemical found in the Christmas Bush plant that could help help relieve the symptoms of sickle cell disease. This plant, which is commonly found in tropical regions of Africa, has a long history of being used as a traditional remedy in the form of a "blood tonic."
The finding has strong scientific backing and is important as many sickle cell patients live in poverty without access to medicine. The plant grows in bushes and can be easily grown.
The research has sparked significant interest, with over 4.4K searches online.
Sickle cell disease is a serious and debilitating genetic condition that can cause significant pain, fatigue, and organ damage. People with sickle cell disease cannot lead normal lives: While sickle cell disease can cause significant challenges, many people with the condition lead active and fulfilling lives with the help of proper treatment and management upto the age of 60 and 70.
Many people in social media are trembling with fear. People who are diagnosed with sickle cell disease are afraid of early death. There are 200+ awareness posts in Instagram, helping #sicklecellwarriors with hope.
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