Its always nice to see more people talking about Sickle Cell Anemia and that the trait is no joke. I have Sickle Cell Anemia and it's a hell of a ride.
@@EyYoMrWhite Sickle cell, trait or the disease, brings a community of people together. When there's something in the news or a report about someone suffering from anything related to SC, everyone in that community can feel or relate to that. Not making it about myself. I just always wanted more people to become aware of the subject Sickle Cell and be more educated on it. People think we over exaggerate when we say just a fever can send someone with SC to the hospital. So many times I have gone to the hospital for a cold that was causing a fever, and nurses look at me strange like "why did you show up to the ER because of a fever. Take some cold medicine and go home." But SC patients can die just from the common cold. The flu had me in the hospital for almost 2 weeks due to complications with Sickle cell. People need to learn that not all "disabilities" are visible and be more careful when they are sick around Sickle cell people. Sickle Cell doesn't have to limit us from everything, we just have to be more careful. You can react to a cold or an insane work out better than someone with SC or the trait. Plain and simple
@@TadesanYeah, it really makes one wonder if there is some real correlation. The benefits of malaria resistance must be immense when even those downsides can't pressure it away. And now that malaria is being worked on, means that the evolutionary benefit goes away and sicke cell should co away as well. On the other hand exactly the same medical advancements also cause sicle cell patients to survive things they otherwise wouldn't. We basically took a lot of evolutionary pressure away from our species.
I have sickle cell trait and I had no idea until this year that it might be the cause of my unexplained health issues. Thanks for spreading awareness. Oh and I’m Caucasian (blonde and blue eyes) much to the surprise of my doctors.
This is really fascinating to me from a different angle. When I was in boot camp in the US Navy, recruits with sickle cell or G6PD had a red tag on their dog tags, and were paid extra attention while working out (both punishment workouts and regularly scheduled ones). Watching these videos, I think I have a better sense as to why (though I still don't really understand G6PD). Thank you for shining a light on one of the little mysteries in my life.
@@debayeuxchats5607 No, it was strictly Sickle Cell and G6PD that had them. I remember one of our division's leadership--the guy who called cadences when we were marching--had the tag.
If you know about Navy Seals then you must know about David Goggins. I’m starting to think he is super human since this guy goes to the extreme in everything he does and with sickle cell trait. I remember reading that he had hematuria, stress fractures, bloody blisters in his feet and so on after running an ultra-marathon risking kidney failure yet he is alive and well today. David Goggins is truly a madman lol.
@@darkerSolstice in a nutshell, G6PD is an enzyme that works in a specific energy-producing reaction pathway for red blood cells. This pathway also happens to create antioxidants to protect red blood cells from damage caused by reactive oxygen species made during times of muscle exertion. A G6PD deficiency means limited antioxidant production, leading to acute red blood cell breakdown (hemolysis) during workouts and consequently anemia. So yea, anybody diagnosed with G6PD deficiency is just as screwed during an unmonitored workout as anyone with Sickle Cell trait/disease.
I'm glad to hear about Dr. Msaouel and Dr. Tannir's research bringing RMC to light for both patients and other doctors. It's this kind of story that motivates me when I'm in my lab.
HC's story hits close to home. My mother had no insurance and had blood in her urine. Not every time she went, so each time she went to the free clinic they just brushed her off with it being either a kidney stone or a UTI. Turns out it was stage 4 bladder cancer, and I lost her to it in only two years. Don't smoke, the cancer she died from is only seen in smokers (or so I was told).
Granted, once Doctors find out you smoke(d), they'll point more fingers at it than you can count. Even if hit your thumb with a hammer. It's almost a reflex these days. That said, I'm sorry for your loss. Losing a loved one is always hard, but due to a lack of insurance... words fail me.
This just popped up on me feed. I call this God's work. I have sickell cell trait and have had odd blood work for the last four years but nothing. Doctors can't provide me any information. I will definitely mention this to my doctor.
Thanks for bringing to the forefront disorders that doctors are unfamiliar with. We need to take another look at how we educate our medical professionals. There are too many patients having to teach their doctors about disorders that are "invisible" not rare as doctors believe. My two children and I all have hEDS. I have had to research and teach our doctors about it. It isn't rare. But doctors think it is. There is no doctor, no specialty who will take responsibility for this illness in the US. My very young family medicine doctor admitted that EDS was only a footnote in her education. But at least she's willing to learn. My Rheumatologist wants nothing to do with it. The geneticist we were referred to kindly declined to see us bc we don't have the life threatening kinds of EDS. And I know this is just my little corner of this Hell. I can only take comfort that at least what we are dealing with WON'T kill us. At least not directly. But as you've shown, there are plenty of these types of disorders that can. Thank goodness for people like you and the doctor that helped H. C.
Also it seems to be an universal thing that doctors are not taking their patients always seriously. I'm from Nordics, but my dad was forced to life 6 months with broken wrist. He had a motorcycle accident and doctors patched him up. After months of recovery, the doctors said how my dad is now all fine. My dad however said how his wrist is still slmost unusable due pain. Doctors said "Nonsense" and sent my dad to psychologist due "Imagining pain after trauma" After 6 months of suffering my father went to see a private doctor, who found out my fathers wrist was close to a bone powder.
@@jarskil8862 I'm so sorry to hear this. Yes, it seems no matter what country, we are all forced to be vigilant medical advocates for ourselves and loved ones. I really feel that doctors need a more in depth education. This includes the art of dealing with humans. We are not all alike. We come from varied backgrounds and experiences; and increasingly global ones as well. This makes for the need to be flexible in the ability to think outside the box, not just scientifically, but interpersonally as well.
@@jarskil8862 I've seen the biggest problem happens when the doctor can't figure it out in the amount of time they have set aside for the patient. They just say "it's nothing", with no real explanation. They don't wanna admit they don't know what the problem is, and they don't have time to continue investigating to figure it out, so they just send you away with nothing but a huge bill. Giving doctors time to actually deal with each patient, and hiring enough to cover all the patients cuts into profits though, which is obviously unacceptable. So we suffer.
Glad to see it stated outside of the “sports” world. Coaches who have never done the workout themselves will often times decimate instead of stimulate. Max Recoverable Volume is a real thing and most people don’t understand what chronic non-recovery does to performance and even just attitude towards the sport.
I'm pretty sure KC did his hundreds of workout reps all on his own accord (or at least was described as such) in order to "catch up on his pre-season conditioning" after taking a break due to depression. His case had absolutely nothing to do with a coach. Sure, it's helpful to educate coaches about MRV but it's just as, if not more, important for athletes to learn it too.
surprised at the highly technical verbiage i was thinking to myself 'damn this guy must be a doctor or something' really shows how much he dumbs down the chubbyemu videos.
This set is simply brilliant, Dr Bernard. Very few times have I ever been at a loss of words sufficient for the situation, but, here we are! Thx so much, Dr Bernard; hero!💖
sorry to hear 😞, hope you're getting the care you need. still *mostly* do, although we're seeing things like colorectal cancer happening in more people under 50 now
@@HemeReview I appreciate your reply and your concern. I am really happy with the care I am getting (I'm in the UK) - i really have nothing to complain about. I hope you're doing well yourself. Really love the videos.
I love both of these channels! Please continue to make these because even though I am not in the medical community I love to learn about the complex mechanisms that occur and can go wrong in the human body.
7:40 it's so sad that we have to censor words like cocaine and things like that, and having to fear demonetization for failing to do so just because of the broken state of the platform. Fantastic video as always, very informative and interesting, even for people who aren't studying medicine. Thank you!
This is a very typical example of institutionalised racism in healthcare. This form of cancer usually only affects African individuals and because of this, it is under-researched and dismissed so easily. There are probably many more cases of this but since they're most likely only found in poorer nations we are unable to document them. It's a bit of a push but this is the same for how difficult it is for dark-skinned people to receive proper information on dermatological disorders since most studies and graphics are done with pale-skinned examples.
It's really nice to see more videos from Heme Review. As someone who is studying medical sciences, its so fascinating to hear about this research and to really contextualise everything. Amazing job Dr Bernard, hope to see more indepth discussions from this channel!
the fact that cancer is seen as an "old person disease" may be what leads to it being seen like that in the first place. People don't bother getting checked for cancers until they get older, and that's when they find it, so that's how it's known. Realistically it may have been growing for years earlier
Thank you for bringing to light these diseases and things that are not commonly discussed/believed/treated. My family and I have a few rare inherited conditions (classical ehlers-danlos syndrome, a kind of ocular, partially-expressed albinism and a few diff platelet/blood disorders as well as a congenital condition involving brain tumors that has killed 2 generations already but no-one knows what it even is) and there is nothing more disheartening than being told by medical professionals "you don't know what you have, I know better". I wasn't believed about having cEDS until we all got genetic tests done showing my dad, brother and I have it, and in the mean time I'm dealing with extensive ligament & muscle damage to my hands, neck, wrists and spine which mean I'll never play my flute again (I was a professional orchestral musician). Seeing people overcome odds, especially finding some kind of help where they were initially fobbed off (and where racism was a possible factor) is heartening that maybe there are still some good folks out there.
Oh my. You just helped me put my "rare" mild-ish Porphyria Variegata into perspective. I've been feeling down because it is acting up a bit and it is hard to find any _useful_ advice. Often I feel like I am just being lazy and imagining it - and then boom! I get a few days without symptoms and I remember how it should be. But at least doctors tend to believe me, even though they can't really do much more than listen. And my inherited wonky gene seems to be of the sort that I should be able to keep it quiet by throwing glucose at it and monitoring my liver. For some light relief you might like the very nice youtuber, Jessica Kellgren-Fozard of vintage glamour and lesbian fabulousness who seem to have a mix as weird as yours (but very different!) - loads of hard to dx stuff plus EDS that was diagnosed quite late. Mixed in with the glamour/vintage youtube stuff she has some nice vids on how she deals with her body not working.
Always remember that it isn't important that you do what others do, but that you do what you are able to. If your body simply doesn't allow you to do something, you aren't any less for it. The fact that you do what you can is demonstration enough.
Is it medical racism tho, if doctors are only counting on probabilities? I did not get MRI scan instantly after a stroke, because doctors said "Its simply impossible for such young guy to have a stroke" The symptoms faded but only on next day they took an MRI, and look at that, despite doctors claims, they found a blood vessel, that is naturally unnaturally thin, which might have had circulation problem. Now Iuckily I have MRI scan every 4th year when they check condition of that vein.
Many members of my family have the Thalassaemia (presence in blood of the sea?) trait which is similar to Sickle Cell but from the Mediterranean and Asian continent, and doctors know so little about it. I really wonder if it’s responsible for certain health issues I have but no one knows anything!
Its crazy how many people in the medical field either don't really know a lot about Sickle cell or undermine those with it or the trait. Happens to me too damn often. Hematologists are your best options when it comes to SC
I'd just like to point out that a lot of people seem to think that because Sickle Cell is found in people from African decent that must mean everyone with it must be either black or have black parents etc., but that's not true at all, my brother has it and one of my ex girlfriend's has a sister with it, all are white and as far as I'm aware have had no African ancestors within at least 3-4 generations, although I couldn't say anything about before that. 🙃
A good genetic test such as the one 23 & me provides can help you be informed of what genes you have that you could pass on to your children or can cause help issues with yourself.
Sickle cell anemia affects about 72,000 people in the United States. Most Americans who have sickle cell anemia are of African descent. The disease also affects Americans from the Caribbean, Central America, and parts of South America, Turkey, Greece, Italy, the Middle East and East India.
I came right over here after almost crying my eyes out over HC. So glad he survived, but who knows how many other people have died from this and misdiagnosis. THIS is something people on Twitter and in Washington should be discussing; in my opinion.
Does anyone know whether hypoxia induced RBC sickling in sc-trait patients is reversible, like how the heme group reversibly changes conformation in response to oxygen binding/unbindling in healthy RBCs? If reversible, a targeted drug shifting the equilibrium towards the normal conformation could be a statin-like statistical treatment to lower the risk of RMC for sc-trait athletes
@@jedimaster91 Oh, right! Thank you! Yeah, I’m aware...I almost went into a profession where I would have had such requirements, myself! Haha! It’s a job that would have been made so much easier if these had counted for continuing education! Wish they counted for your job, as well!
I'm pretty impressed by Dr. Msaouel's ability to grow and trim up a beard in just a matter of a few minutes. But seriously, great video as always on both channels, Dr. Bernard. This is absolutely fascinating stuff.
I could not thank you enough for your videos. Not only content wise, but also for enlightening people about a neglected disease (for obvious reasons, race and class). Thank you so much.
I don't understand half the things going on in these videos, but I still find them fascinating. Those med students joking about needing to know about this disease were gross. I imagine one day they'll be the kind of doctors that misdiagnose patients like the idiot in the chubbyemu video that said HC had HIV.
My veteran husband died of metastatic lung cancer last September and i wonder why the VA never caught it even though he had regular chest xrays. I'm still so mad at the VA doctors
I've never known about RMC before watching video about the guy with intense exercise... And it ends up with really underattentioned yet super-agressive cancer Discussion about SC disease/trait is really Important! This channel is golden!
Considering the impact of sickled cells, it's amazing the African continent has one of the lowest incidences of cancer overall. For instance 5x as many European women get breast cancer vs women in Africa. Sadly survival rates are lower in developmental countries though
My shirt is always drenched in sweat, and I always max out. No matter what I am working on. But I am a great big fat guy so my shirt is drenched in sweat if I go up the stairs too many times.
I'm confused. RBC's don't replicate right? Are the cancers arising from the sickled erythrocytes? If so that would mean that they gained function to undergo mitosis right? Or do the sickled erythrocytes affect actuall kidney cells??
I wonder if there is any connection between sickle cell trait/disease and low oxygen from corona? Like are people with that more likely to die when their o2 levels drop below a certain point? Do their blood cells in the lungs "sickle"?
I’m a little unclear what the primary mechanism of damage is here, maybe because I was getting ready while listening to this video. Is it worsening hypoxia from sickling or is it micro vascular damage from sickled cells?
worsening hypoxia from sickling that activates low fidelity DNA repair mechanisms. all in an environment where DNA double strand breaks are common due to the hypertonicity
Around the 13-14min mark is why I absolutely loathe when people say "horses not zebras". It kills thinking altogether and people just assume the most common thing is likely the presenting problem. Of course common things occurs commonly, but when you see stripes, its a zebra not an off-colored horse; when you see a pink feather, its a flamingo not a weirdly colored crow.
I had to sign paper work/ waiver when I played college lacrosse. I have sickle cells trait as well. How do we know what’s too excessive for exercise? This shouldn’t be perpetuated as an AA disease though. I am a half white half Hispanic female. I want to know if it’s possible that when I was young and played sports that if I would play too long I would lose my eye sight ( become gray) and have to walk off the field because I could no longer see. I always believed it was because of a lack of oxygen. Maybe it also has to do with sickle cell.
I guess this might also be a reason for people more pre-disposed to having sickle-cell to be having worse outcomes in Covid. I think Covid also reduced oxygen. Not sure.
Hey! Heme Review! Please read this: please use a different thumbnail for the Heme Review because it shows up in recommendations and spoils the mystery in the original Chubbyemu vid!