The video explores the complex and often misunderstood world of sickle cell disease, focusing on its genetic origins and the challenges faced by those affected by it. This condition, which causes red blood cells to become abnormally shaped and leads to a multitude of health issues, is prevalent in people of African, Asian, and Southern American descent. The narrative includes personal anecdotes and the broader social implications of living with sickle cell disease, highlighting the hereditary nature of the disease and its origins as a defense mechanism against malaria.

Personal experiences are shared to illustrate the real-life impact of sickle cell disease, particularly in communities that may not have access to adequate healthcare or face social stigma. The video describes the miseducation and lack of awareness in countries where the disease is more common, as well as the discrimination faced by affected individuals in more developed regions, like the UK, where healthcare systems may still inadequately address the needs of minority populations due to systemic biases.

Main takeaways from the video:

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Key Vocabularies and Common Phrases:

1. constituents [kənˈstɪtʃuənts] - (noun) - The parts or components of something. - Synonyms: (elements, components, ingredients)

You trust them to carry the very essence of your constituents, oxygen seamlessly.

2. venereal [vəˈnɪrɪəl] - (adjective) - Relating to sexual desire or sexual intercourse; sometimes used to refer to diseases transmitted through sexual contact. - Synonyms: (sexual, sensual, erotic)

It's believed that sickle cell initially developed as a defense mechanism for a condition called venereal, which explains why it's more prominent in those from ethnic descent.

3. catalyst [ˈkætəlɪst] - (noun) - A person or event that quickly causes change or action. - Synonyms: (stimulus, spur, impetus)

Let this TEDx talk be a catalyst for change, an impetus for a new reality, one where the symphony of our 35 children, red bloodstot, harmonises with the melody of compassion, understanding and inequality

4. heredity [həˈrɛdəti] - (noun) - The passing on of physical or mental characteristics genetically from one generation to another. - Synonyms: (genetics, inheritance, ancestry)

Sickle cell disease is a group of genetic disorders that force me to become accustomed to the concept of heredity from a very young age.

5. stigma [ˈstɪɡmə] - (noun) - A mark of disgrace associated with a particular circumstance, quality, or person. - Synonyms: (shame, disgrace, dishonor)

This shows that sickle cell is more than just a genetic condition due to the entire stigma of sickle cell.

6. narratives [ˈnærətɪvz] - (noun) - Spoken or written accounts of connected events; stories. - Synonyms: (stories, tales, accounts)

Welcome to the unsane narratives of living with siphon disease.

7. miseducation [ˌmɪsˌɛdʒʊˈkeɪʃən] - (noun) - Poor, wrong, or harmful education. - Synonyms: (misinstruction, misinformation, misguidance)

This lack of understanding extends to Africa as well, where miseducation has meant that sickle cell sufferers are suffering at their hands of ignorance.

8. systemic [sɪˈstɛmɪk] - (adjective) - Relating to a system, especially as opposed to a particular part. - Synonyms: (structural, comprehensive, inclusive)

This supports the view that challenges faced by those with sickle cell disease are not isolated incidents, but rather systemic issues with real consequences.

9. empathetic [ˌɛmpəˈθɛtɪk] - (adjective) - Showing an ability to understand and share the feelings of another. - Synonyms: (compassionate, understanding, sympathetic)

By challenging these misconceptions, we actively contribute to reshaping the narrative surrounding healthcare, emphasising the equal significance of all conditions, and promoting a more inclusive and empathetic approach.

10. cynical [ˈsɪnɪkəl] - (adjective) - Believing that people are motivated purely by self-interest; distrustful of human sincerity or integrity. - Synonyms: (skeptical, doubtful, distrustful)

This human being a cynical kind of humor that laughed at how the good and bad aspects of a disease can just be picked out and explained by people who have no idea of what suffering is like.

Unveiling the Unseen Narratives of Black Health in the Diaspora - Kristie Martins - TEDxUWCRCN

Take a moment to imagine the 35 trillion red blood cells wholesale through your body. 35 trillion tiny, reliable, concrete round. You trust them to carry the very essence of your constituents, oxygen seamlessly. It's this unspoken partnership that fuels your every breath, your every heartbeat. And it is the very reason I can give you this speech today.

Now take a pause, hear your heart beating. That's where red blood cells at work. And consider this. What if this harmony, this narrative, wasn't as harmonious as it seems? The truth is that red blood cells aren't always concave, aren't always round, and aren't always reliable. How often do you think about red? But not often, right? And why should you? There are these tiny, reliable. An army working tirelessly within us. But what if I told you that their story can take unexpected turns? What if the very essence of life, the oxygen you are breathing right now, is not as guaranteed for everyone? Just as you have your narrative as a healthy individual, there are hidden tales, struggles and triumphs within the lives of those navigating ties to silica.

Welcome to the unsane narratives of living with siphon disease, particularly within the diatasborough people who live in a different country from their original homeless.

Let's first start by defining the condition. Sickle cell disease is a group of genetic disorders that force me to become accustomed the concept of heredity from a very young age. It has many different manifestations and is one disease that can pass down from generation to generation. My mother is a sickle and she passed down her gene to me. However, I have a less severe version of the condition called sickle cell trait.

It's believed that sickle cell initially developed as a defense mechanism for a condition called venereal, which explains why it's more prominent in those from ethnic descent, particularly african, asian and southern America. Sickle cell arises from the mutation of a gene that codes for abnormal hemoglobin, a substance in the red blood cells that is responsible for carrying oxygen around the body. This abnormal hemoglobin causes red blood cells, our reliable, round, red blood cells, and sticky and rather c shaped, hence the name sickle cell.

Due to this, abnormal cells lock vessels, so not enough oxygen is transported around the body, resulting in a sickle cell crisis, which includes excruciating pain, fatigue, stroke and other health complications. By living as a carer for my mother in the UK, and as a signal myself, I have borne witness to one of the most common genetic conditions in the world, but also one of the most commonly disregarded. Having seen my mother being cactillarized as clinically extremely vulnerable during COVID but still waiting weeks to receive a child drug was an example of this.

This is while we knew of people with chronic lung disease obesity placed in the same category who only had to wait a day for the same drug classified as a rare condition, even though, according to the National Institute of Health, 20 million people are affected by citizens worldwide.

I wonder how the constituents rare to you. Now let us transport ourselves to the home of this disease, Africa, because this lack of awareness transcends more than just a race issue or an unwillingness of the western world to care for conditions affecting a minority population. This lack of understanding extends to Africa as well, where miseducation has meant that sickle cell sufferers are suffering at their hands of ignorance. Some countries in Africa do not recognize sickle cell as they do not have the technology to diagnose it and or have a large rural collection. This means sicklers go untreated, making their condition worse.

In addition, there is also a culture stigma surrounding sickles. Some tribal communities, such as the Yoruba community where I'm from, may believe that sickle cell is caused by witchcraft. Thus, sickle cellars are punished not only by their disease, but by the community, with some even facing exile. This shows that sickle cell is more than just a genetic condition due to the entire stigma of sickle cell.

Within Africa and beyond, there is this stigma that sicklers are weak, they die young, they don't try. This means sicklers now embody this mentality. They don't participate in sports or academic conditions, all because of this toxic mentality that they can't. These sticklers account for 40% of the population. However, statistics are meaningless in the making. Suffering I encourage you all to listen and educate ourselves on conditions that affect those around us. There is such a transformative potential that lies in the simple act of global health is our health.

After that, details of Africa let's head back to the UK and return to my experience with civilian growing up with nigerian heritage in the UK is an example of being a diaspora. I was exposed to a country with a seemingly strong healthcare system and don't get me wrong, I'm grateful for the NHS, the healthcare service for those in the UK, that's free for everyone. However, it unfortunately prioritises the health of the ethnic majority, that is, white people. Due to this, I and many others have experienced discrimination stemming from a lack of understanding.

An example of this would be the case of Richard Hokura Gaezhe. He was forced to call the emergency service 999 from his own hospital bed after being denied numerous life saving blood transfusions due to his pain. Not needed to split up. This shows that healthcare professionals failed to take the suffering of a clinician seriously enough, even though the pain sicklers experienced experience, especially when they undergone crisis. Now, despite the UK being a diverse and multicultural hub with 46.3% of the London population being nonwhite, the only insight I had into my health was with my mother. She is a sickle cell sufferer who also works people with sickle cell at one of the top hospitals in the UK.

Through from the viewpoint, I see that this issue is not just stand alone. Seeing NHS healthcare campaigns about different conditions like cardiovascular disease and diabetes, for example the diabetes prevention program, but never seeing sickle cell. I never felt represented. I never felt seen. This was impactful because it taught me that if I wanted to see change, I would have to take things into my own hands now.

Hands that ought to be laughed when the first mention and only mention I saw of sickle cell was in my GCSE textbook under the topic of genetics, a passing comment about how sickle cell is classified as a good mutation under genetics. A good mutation because those with sickle cell are less likely to develop an area due to only some of their blood cells doing sickle cell. This human being a cynical kind of humor that laughed at how the good and bad aspects of a disease can just be picked out and explained by people who have no idea of what suffering is like. I had to go out of my way to educate myself on my condition using events and resources from the civil society, sickle cell society, which is the only UK recognized charity. That in itself is a testament to thinking as well.

But now how can we do anything about this to catalyze this much needed change? Our efforts must extend beyond addressing the physical aspects of physical competencies and dismantling the deep seated stigmas enveloping it.

Robust evidence, as presented in studies such as one published in the Journal of Pain and Symptom Management, shows a convincing correlation between patients with sickle cell and both race disability discrimination. This supports the view that challenges faced by those with sickle cell disease are not isolated incidents, but rather systemic issues with real consequences. Now, the dismantling of false narratives, depraving sickness as weak or destined to die young, is not just a matter of correcting misconceptions, it's an urge of call to rectify the systemic neglect that lies within global health systems.

Studies further illuminate the repercussions of discrimination, indicating that individuals who have experienced race or disease based discrimination are 53% more likely to question and potentially resist volunteer health care recommendations from their physicians. This underscores a fundamental breakdown in the patient book relationship where discrimination is at play, raising valid concerns about the sincerity of her rights.

Now, as we delve into the complexity of race based disease discrimination, it becomes crucial to address skeptics who may doubt the extent of this existence. To those hesitant about let me tell you that instances of race based decease discrimination are not merely isolated. The abundance of studies on this matter and the ongoing discourse within the sickle cell community are resounding proof that these are systemic challenges, not outliers.

While it is true that healthcare professionals are dedicated to riding on bias treatment, the reality is that subconscious biases can inadvertently influence medical conditions such as Mendez. My mother was pregnant and had complications and her pain wasn't definitive, as the doctor desisted as just normal pregnancy pain, even though my mother insisted that this pain was not like before. But this resulted in numerous emergency operations which feel that she had severe internal kidney, but she's one of the lucky ones. This is part of the reason why the maternal mortality rate of black women is the highest of any racial group.

This should not be the case. It's essential to emphasize that the goal here is not to assign blame to individuals, but to bring attention to systemic patterns that contribute to health disparities. This isn't just an issue of race, it's an issue that compromises people's health and lives due to societal ignorance.

Expanding this dialogue, it's essential to recognize that race based deceased discrimination is not confined to civil rights or a specific ethnicity. It permeates various communities. Witnessing NHS complaints about conditions. Specific conditions, like the NHS diabetes prevention program, while others are being overlooked, has taught me that so much suffering remains hidden from my health. The narrative must shift from assuming that conditions affecting specific populations are less significant. We must not be deceived by preconceptions and unseen statistics.

By challenging these misconceptions, we actively contribute to reshaping the narrative surrounding healthcare, emphasising the equal significance of all conditions, and promoting a more inclusive and empathetic approach.

Now imagine a world where discrimination based on the unique characteristics of blood cells, a mere 35 trillion tiny, concave roundness, becomes irrelevant to the past. Such a utopian vision sounds idealistic, right? But let me reveal this new reality, because this is not beyond reach.

The realization of this new reality begins with each individual, including you, the audience. By actively engaging with this speech, you are taking a crucial step towards shaping societal perceptions, fostering empathy and contributing to the creation of a more compassionate and informed health technology. The strength, resilience and tenacity exhibited by those living with sickle cell, as collected in these narratives, serve as a powerful category.

Through collective awareness and understanding, we can dismantle the stereotypes that end the progress, creating an environment where individuals, irrespective of the health natures, receive the dignity and support you deserve. Your role in this transformative journey is pivotal as it empowers a shift towards a world where healthcare is inclusive, discrimination free, and truly prioritizes the well being of every individual.

Now, as we conclude this transformative journey into the unseen narratives of slickle cell and the pervasive issue of race and discrimination, envision a world where the intricate dance of 35 trillion red blood cells become a symbol of unity rather than a source of disparity. The narrative we've explored is not one confined to the confined genetic dictations or healthcare statistics.

It's a story of resilience, strength and triumph over the barriers and narratives that has not just tells us to tell, there are stories woven into the broader fabric of our diverse world. The power to reshape these narratives lies within each of you. Dear listeners, by taking actions, engaging with these stories, and challenging preconceptions, you become able to change.

This isn't merely a call to awareness, it's an invitation to embark on a collective journey towards a more compassionate and informed her landscape. Imagine the profound impact your understanding and empathy could have, not just on those living with sickle cell, but communities facing discrimination based on her conditions work.

Let this TEDx talk be a catalyst for change, an impetus for a new reality, one where the symphony of our 35 children, red bloodstot, harmonises with the melody of compassion, understanding and inequality.

Healthcare, Sickle Cell Disease, Discrimination, Science, Education, Inspiration, Tedx Talks