#sickle cell disease

[smoov-criminal]

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

#disability pride month #disability pride #cpunk #cripple punk #multiple sclerosis #marfan syndrome #cerebral palsy #bells palsy #hidradenitis suppurativa #cauda equina syndrome #mixed connective tissue disorder #hyperandrenergic pots #eds #ehlers danlos syndrome #stickler syndrome #mitochondrial disease #cystic fibrosis #sickle cell disease #myasthenia gravis #post-cholecystectomy syndrome #swan #syndrome without a name

[crippledwithrage]

This.

Someone finally explained it

#cpunk blog #cpunk #cripplepunk #disablity #invisible disability #physical disability #disabled #disability memes #sickle cell disease #thalassemia

[melblink13]

Hi! I’m a chronically ill design student studying the experiences of people with chronic health conditions interacting with primary care If anyone would like to take my survey that would be great!

#spoonie #chronic illness #chronically ill #mental health #neurodivergent #pots #elhers danlos syndrome #chronic fatigue #adhd #autism #fibromyalgia #mast cell activation syndrome #chronic pain #invisible illness #sickle cell disease #diabetes

[realjaysumlin]

I do my best to post my views as a scientist, not one who is indoctrinated into believing in pseudoscience, the false ideology that skin colors represent race for humans. The very word negro irks me because negro is demeaned in such a negative way, instead of blanco in Spanish.

Negro means "Black" in the Latin language and blanco means "white" in the same language, so why isn't blanco demeaned the same way as the word negro? Dark skin humans need to start defining themselves and stop following the narratives and the negative stereotypes of people who identify themselves as white.

Dark skin humans are a product of natural selection, a process better understood by the meaning of photosynthesis. Which means how every living thing on earth interacts with our sun.

Pale or fair skin humans are a mutation from dark skin where the UV-Radiation level is low. The same can be said about Sickle Cell Anemia, which I hear as being called out as a Black people's disease, when skin color again don't have a damn thing to do with the cause of Sickle Cell Anemia.

Evolution is a wonderful thing and how all living these adapts to our environment to protect itself from deadly diseases like Sickle Cell Anemia. Sickle Cell Amenia is associated with malaria, which is caused by a heavy population of mosquitoes, particularly a specific type of a female mosquito, in theory.

The human body protects itself from malaria by the cells becoming sickle to prevent malaria; therefore, people with Sickel Cell Anemia is immune to malaria.

#black love #black history #black positivity #black africans #evolution #science #science side of tumblr #sickle cell anemia #sickle cell disease #sickle cell awareness

[luckydiorxoxo]

The best thing today besides Nicki Minaj's new album release is that I read that there is a possible FDA APPROVAL cure/treatment for sick cell disease. This is phenomenal! 🥹🔥🔥

#sickle cell disease #sickle cell anemia

[vampirepyramidscheme]

Something for the vampire lovers out there!

Vampires of Color: Crimson Pride features the work of 20 creators, including full color illustrations, a mini comic, short stories and novel excerpts, and even a TTRPG game! All works are centered around BIPOC vampires and zine profits will be donated to the Sickle Cell Disease Association of America (a disease which greatly impacts the BIPOC community).

Preorders are open until 1/7/2023 - get your copy here: bit.ly/VOCzine

#vampires #bipocvampday #black vampires #poc vampires #vampires of color #illustration #short stories #anthology #zine #preorder #zine promo #zine preorders #art zine #writing zine #bipoc artists #charity #charity zine #fundraiser #sickle cell awareness #sickle cell disease

[felixcloud6288]

#original post #genetics #crispr #sickle cell disease #Youtube

[thebananashapedbloodcell]

Having a chronic illness is a very lonely and isolating experience.

Being in pain and not wanting to burden family and friends means most days I keep how I am feeling to myself because I know others are going through their own life and I don't want to be a stressor to others.

It can all get heavy and hard to manage at times, but I continue to move slowly and give myself grace. I hope you do the same.

#sickle cell anemia #sickle cell awareness #sickle cell disease #invisible illness

[theroadtofairyland]

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.

#not art #medical science #sicklecell #sickle cell disease #sickle cell awareness #sickle cell anemia

[reasonsforhope]

“British scientists have grown human red blood cells in a lab for the first time, and conducted a clinical trial to give it to patients.

The blood is grown by encouraging stem cells found in a blood donor’s sample to become new red blood cells, and opens the door to transfusion treatments for those with ultra-rare blood types.

For the near total majority of blood transfusions, British hospitals will still rely on people rolling up their sleeves and donating. This is, and will remain the case for, A, B, O, and AB blood types.

But what if a patient needs a blood transfusion of the “Bombay” blood group? It’s a tough call, as the British NIH knows of three people in the whole of the UK with this ultra-rare blood type.

Certain diseases, such as sickle-cell anemia, require regular blood transfusions, and if this patient were to also have the Bombay blood type, or “Jka-b-” or “Rh-null” also called “golden blood,” or “SARA” type after the first person it was discovered in, they are in serious danger...

“This world-leading research lays the groundwork for the manufacture of red blood cells that can safely be used to transfuse people with disorders like sickle cell,” said Dr. Farrukh Shah, the medical director of transfusion at NHS Blood and Transplant.” -via Good News Network, 11/16/22

#blood #medical research #medical science #blood type #sickle cell disease #good news #hope #clinical trials

[snail-cryptid]

Hi! I hate having to ask for help, but without it what I'll do  .I have no where to go and i am asking for any kind of help for my daughter treatment diagnosed with sickle cell. but the worst were the THREE strokes to the brain. Kindly send donation and share if you're able🙏

Im just as broke as the next guy, I'm genuinely sorry :((

I'll share this as much as I can though, again I apologize for not being able to help more directly

#rb #mutual aid #mutual assistance #paypal #fundraising #sickle cell disease #sickle cell awareness #help them pls #ask tag #ask away! #answered asks #strokes #donations #reblog chain #reblog > likes #reblog please #reblog

[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

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Yaw Ansong Jnr speaks on technologies for sickle cell disease patients

#sickle cell disease #sickle cell anemia #sicklecell #blood #health #pediatrics #africa #population health #public health #medicine #haematology #sickle cell #health informatics

[crippledwithrage]

If the weather changes one more fucking time I'm gonna fall apart at the seams

#disabled #disability #cpunk #cripplepunk #chronic pain #sickle cell disease

[drforambhuta]

The decision to undergo bone marrow transplantation (BMT) in a lymphoma patient is highly personalized and depends on several key factors:

• Histological Subtype: The specific form of lymphoma greatly influences treatment choices. For example, aggressive diffuse large B-cell lymphoma (DLBCL) or refractory Hodgkin lymphoma may require BMT.

• Disease Stage: The stage at the time of diagnosis plays a crucial role. BMT is often considered for advanced-stage lymphomas or those that have recurred after initial treatments.

• Response to Previous Therapies: Patients who do not achieve remission or experience a recurrence after traditional therapies may explore BMT as a treatment option.

• Age and Overall Health: The patient's age and general health significantly impact their ability to withstand the demanding BMT process.

• Donor Availability: In the case of allogeneic stem cell transplantation (allo-SCT), locating a compatible donor, typically a sibling or a well-matched unrelated individual, can be a complex undertaking.

A bone marrow transplant can be recommended in other medical conditions besides lymphoma, like leukemia, aplastic anemia, thalassemia, myeloma, and sickle cell disease. You can choose to undergo a bone marrow transplant from some of the best hospitals in Delhi. The cost of bone marrow transplant in Delhi will vary depending on the type and severity of condition being treated and the type of bone marrow transplant being performed.

#bone marrow transplant #cost of bone marrow transplant #bone marrow transplantation #lymphoma #leukemia #myeloma #aplastic anemia #sickle cell disease #thalassemia

[mcatmemoranda]

#sickle cell #sickle cell disease

[gigglesx333]

Hi! I hate having to ask for help, but without it what I'll do  .I have no where to go and i am asking for any kind of help for my daughter treatment diagnosed with sickle cell. but the worst were the THREE strokes to the brain. Kindly send donation and share if you're able🙏

i am so sorry but i have no cash to spare. Reblog to spread awareness

#sickle cell disease #donations #sickle cell anemia #sickle cell awareness #share this