#sicklecell

[longreads]

The Top 5 Longreads of the Week

In this Top 5:

* How sickle cell patients are pressured into sterilization * How opioid restrictions harm the terminally ill * The enshittification of bowling * The sudden ubiquity of steroids * Why sperm is a hot commodity

Learn why our editors are recommending these stories.

[nerdycloudstudent01]

Supacell was absolutely fire. Well overlapped storylines, well placed controversy, ties to current events; plenty of great, note-worthy moments.

As a mixed person with some not-supportive family members due to racially charged differences, I appreciated Rodney’s storyline. Michael and Dionne’s conversations felt relatable. I appreciated Sabrina’s healthcare experience.

Looking forward to season 2. Protect your own, no matter what.

[pumpumdemsugah]

I received the new gene-editing drug for sickle cell disease. It changed my life.

I heard about this a little while ago. I'm glad the US has started the first trails

The UK had its first trails last year and I think the NHS has funding to treat 5000 people.

[cindythecyclops]

Hello! My name is lyn. I have started a campaign to seek help for my daughter treatments diagnosed with sickle cell disease but the worst were the THREE strokes to the brain, Because of the strokes she now has to have chronic transfusions , I am reaching out to you with a warm heart so that you can share my post against friends and family to spread the word, and a small donation💰 if you can, Please I am on my knees asking you to help me complete this.

Thanks for your kindness and generosity 🕊🙏

Please donate here and if you can’t, then share this with others who might be able to.

Best wishes to you and your daughter, Lyn! I hope your goal is met soon.

[trippingthemoonlightfantastic]

It's about bloody time!

There is finally an approved treatment for Sickle Cell. Sickle sufferers have been the victims of the rankest kind of medical racism. I hope the news heartens anyone in the community coping with this difficult illness.

[nuadox]

Study: Sickle cell disease 11 times deadlier than previously recorded

- By Nuadox Crew -

A new study published in The Lancet Haematology journal reveals that the number of deaths caused by sickle cell disease is significantly higher than previously estimated. 

The study found that the mortality rate attributed solely to sickle cell disease is 11 times lower than the actual number of deaths when considering various risk factors and associated conditions. Sickle cell disease not only leads to underdiagnosis but also increases the risk of infections and death from conditions such as stroke, heart problems, kidney problems, and pregnancy complications. As a result, doctors may overlook the connection between sickle cell disease and the cause of death when listing it on death certificates.

By combining data on prevalence, birth incidence, and mortality, the study estimated that the total mortality burden of sickle cell disease in 2021 was 373,000 deaths worldwide, compared to the previously reported figure of 34,600 deaths solely attributed to sickle cell disease. The increase in mortality was particularly significant in South Asia and sub-Saharan Africa, where the fatality rates were 67 times and nine times higher, respectively, than previously believed.

The research analyzed global health data from 2000 to 2021 and was part of the Global Burden of Disease 2021 study, led by the Institute for Health Metrics and Evaluation (IHME) at the University of Washington's School of Medicine. The study highlights the rising number of babies born with sickle cell disease and the need for early detection and treatment due to the increased susceptibility to severe conditions and infections.

In 2021, approximately half a million babies were born with sickle cell disease, with over three-quarters of these births occurring in sub-Saharan Africa. When considering the total mortality burden, sickle cell disease was the 12th leading cause of death globally for children under the age of 5. However, it ranked among the top three causes of death in countries such as Portugal, Jamaica, Libya, Oman, and San Marino.

The study emphasizes the importance of improving data collection to track progress on sickle cell disease. Instead of relying solely on mortality data, the researchers used a mathematical algorithm that incorporated data on birth incidence, survival rates, and prevalence to estimate total deaths due to sickle cell disease. This approach provided a more comprehensive understanding of the true burden of the disease and its comparison to other leading causes of death.

The research highlights the urgent need for policymakers and public health advocates to address the underestimated burden of sickle cell disease. The implementation of universal newborn screening, the establishment of public registries for case monitoring, and early intervention treatments can significantly alleviate suffering for the approximately 8 million people living with sickle cell disease.

The study also stresses the importance of universal newborn screening for early diagnosis and management of sickle cell disease. While newborn screening is universal in the United States, many low- and middle-income countries lack a comprehensive screening process. Increasing global awareness and adopting health policies that expand neonatal screening and improve treatment accessibility are crucial for improving health outcomes for individuals with sickle cell disease.

--

Source: Institute for Health Metrics and Evaluation

Full study: Global, regional and national prevalence and mortality burden of sickle cell disease, 2000-2021: a systematic analysis from the Global Burden of Disease Study 2021, The Lancet Haematology (2023)  DOI: https://doi.org/10.1016/S2352-3026(23)00118-7

Read Also

Yaw Ansong Jnr speaks on technologies for sickle cell disease patients

[vicontheinternet]

Me weaving sickle cell into my story any chance I get for the sake of “awareness”

[thatsickledoc]

The thing about chronic diseases or growing up with a chronic disease is that at times there's a camaraderie, not just with people with the same chronic disease but with all people with a chronic disease or growing up with one. You understand each other in terms of pain, fatigue, hospital visits and never ending medications. But at times it becomes a competition. 'My pain is worse', 'I can't even walk', ' At least you can eat', 'At least you don't look sick'. But what I envy the most in others is time. The time before you were diagnosed. When you were a healthy growing up child. When you had so many dreams and your hands reached out to the stars. I wish I had that time. I wish my earliest memories weren't of being in a hospital bed, of having my parents looking at me with the resignation that she won't make it. I wish I knew the love they had for me, the bond we shared wasn't because of those countless hospital trips or near death experiences. I wish I grew up without the word 'sick' almost always attached to me. I wish I had a time before sick, a time I was just me, healthy me.

[lathanunspoken]

This defines the war within me to a tea.

[neotia-getwel]

Sickle cell disease is a group of inherited red blood cell disorders. It is characterized by the presence of an abnormal form of hemoglobin, known as hemoglobin S.

[riomed]

Sickle Cell Anaemia and How It Can Affect Your Family 

Sickle Cell Anaemia is a type of inherited blood disorder known as the Sickle Cell Disease. It affects the red blood cells which are usually round and flexible, so they can move easily through blood vessels. 

[nokashikiari]

KYLA SICKLE CELL TREATMENT(Bonemarrow transplant)

Please help Kyla. She is close to her goal

[urbnvision]

Raising Sickle Cell Awareness in Memory of Israel Adeoye.

So my nephew (by way of marriage), Israel Oluwamide Adeoye, passed away 3 weeks ago from Sickle Cell Disease at the age of 27. 

After his death, I discovered his TikTok page and proceeded to listen to all of his videos and learned more about his experiences with the disease and specifically with the medical establishment. 

Y’all! I was appalled. And slightly embarrassed for not having known more while this was happening. I’ve known sickle cell exists and could have rambled off a brief definition of what it was in terms of its etiology. What I did NOT know was the ravaging way in which it affects people’s actual daily lives and an inside look at what the day-to-day looks like for those going through it. Listening to his stories deeply humbled me.

When I met my husband, it was on our second date that he asked me about my status and if I was a carrier for sickle cell trait (AS). I did not know. Still don’t know actually. But because he knew he was AA (a non-carrier), I guess it didn’t matter for us so much in terms of carrying on dating. But I understand now why we had that conversation so early on.

I also learned from one of Israel’s TikToks that Sickle Cell Awareness Day is the same day as Juneteenth. He was disheartened that the Juneteenth holiday overshadowed Sickle Cell Awareness Day and wanted more people to know about the disease. He often ended his videos detailing his medical abuse with a charge for us to help and “do something about it.” I kinda took that charge to heart. 

In honor of Israel, and all Sickle Cell Warriors, I wanted to take up his cause and do my small part to help with raising awareness. We are all we got y’all! Back in the 70’s the Black Panther Party saw this need and they were fighting for this awareness too. One of the main initiatives for the Party setting up the free health clinics was to get people screened for sickle cell disease and trait. It is 2024, some 50 years later, and still, this isn’t being talked about nearly enough. I know they are beginning to make some strides with gene therapy it seems…but a cure that is readily available and affordable for all is probably still some ways away.

So what is sickle cell disease? According to the NIH, “Sickle cell disease is a group of inherited red blood cell disorders that affect hemoglobin, the protein that carries oxygen through the body. Normally, red blood cells are disc-shaped and flexible enough to move easily through the blood vessels. In sickle cell disease, red blood cells become crescent- or “sickle”-shaped due to a genetic mutation. These sickled red blood cells do not bend or move easily and can block blood flow to the rest of the body.

The blocked blood flow through the body can lead to serious problems, including stroke, eye problems, infections, and episodes of pain called pain crises.”

The condition affects more than 100,000 people in the United States and 20 million people worldwide. According to the CDC, “more than 90% are non-Hispanic Black or African American, and an estimated 3%–9% are Hispanic or Latino.” Pause and let that sink in for a moment. More than 90% of us! 

“About 1 in 13 Black or African American babies are born with sickle cell trait.

About 1 in every 365 Black or African American babies are born with sickle cell disease.

The estimated life expectancy of those with SCD in the United States is more than 20 years shorter than the average expected.”

Those are pretty chilling statistics to me. Like any disease, there is a spectrum of how well one can do while having it, but no one is exempt from the pain.

So with all that being said… The purpose of this post. I don’t know what to do to “fix it” as he asked. And I am sure I don’t have the power to do much, though I will continue to research and figure out a more satisfying answer to that question for myself. But for now… 

I am doing a bake sale for Juneteenth in honor of Israel and for World Sickle Cell Day. The proceeds from the bake sale will be donated to Health Equity Matters Foundation in his name, as was requested by the family at his funeral. 

I would be honored if you all would support this initiative by buying cupcakes or just making a donation if you don’t want the actual cupcakes.

Better yet, if you want to take it a step further, I charge everyone to go get tested to see if they are sickle cell carriers and know their status. Make sure your children know theirs also.

If you are able to, donate blood!

I don’t want to say that he lost his fight to sickle cell. He fought well and was awarded the rest he so desperately needed. But his fight is over. However I am personally making sure that his charge to “do something” did not fall on deaf ears. This is my little version of “something.”  And if nothing else, every Juneteenth y’all will hear from me a post about Sickle Cell Awareness Day, even if that’s all I can do. Posting additional links in the comments for those who want to know more. 

Rest well Israel.

#sicklecell #sicklecellanemia #sicklecellwarrior #sicklecellawareness #sicklecellmatters #healthequity #juneteenth #worldsicklecellday #donateblood #israeladeoye 

[lifestruestories]

(via Against All Odds: Unbelievable Moments of My Life)

[justanotherartblog]

Hello! My name is Pauline. I'm trying to raise funds for my daughter treatments diagnosed with sickle cell disease but the worst were the THREE strokes to the brain, Because of the strokes she now has to have chronic transfusions , Unfortunately I do not have all the resources to keep my daughter safe, that is why I need your help, whatever you can donate to me will be great help to me🙏.

I am sorry that I am unable to donate, but I will gladly spread the word. Best wishes and luck to you. May you and your daughter find health and comfort.

[whiskrs]

What are you supposed to do in this godforsaken country if you need a life saving procedure that costs TWO. MILLION. DOLLARS. Where are you suppose to get that money.

Genuinely asking. What are you supposed to do.

What am I supposed to do for my friend??? Watch him die???

Is Gofundme the only option? To extort money from my other friends and loved ones? To sing and dance for strangers, and hope his story is more marketable than someone else’s?

If any knows any resources for sickle cell patients in Virginia please please send them to me.

I don’t know what I’m supposed to do.