Sickle cell disease: Why is it hard to talk about our pain? BBC Stories
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- Опубликовано: 9 июл 2024
- Sickle cell disease is a serious and lifelong health condition that predominantly affects people from African or Caribbean backgrounds. Symptoms include bouts of pain, strokes, organ failure, and complications that can result in reduced life expectancy. Some consider it a 'silent illness' as those who have the condition rarely speak about it or the pain that they live with.
We speak to 25 year-old Chris who lives with the disease and started his own initiative that aims to create conversation about the condition.
Produced by: Kesewaa Browne
Filmed and edited by: James Stewart
Animation: Gerard Groves
Commissioning Editor: Kimberley Rowell
#sicklecell #sickle #bbc
We are BBC Stories, a group of journalists making films, long and short, with the younger audience (18-24) in mind. The idea is to tackle issues which concern and impact this group of people. So think about anything from race and identity to mental health, money and much more.
I always say it feels like needles flowing through my veins but honestly that doesn’t even began to accurately describe the pain. It sucks because sickle cell is an illness people can’t physically see so if you’re having acute pain people don’t believe you unless you’re on the ground crying.
Being hit by a truck repeatedly
Sometimes it feels like my whole body is shutting down, I’ve slept through the beginning of my teen years and I’m only 14 this disease really sucks. I’m starting to lose my mind over this and no one can see it.
@@lightmycandles2337 this has brought tears to my eyes I'm 29 and i know your pain you are not alone, I slept away most of my life it seems and missed out on so much stuff. Even now being married 3 kids all boys who have the trait I'm tired all the time and that's not including when I'm on my pain meds which is all the time lol but I want you to know you're not alone don't give up.
@@lne_toyz3030 giving up hasn’t even so much has crossed my mind thank you for encouraging me to continue with my plans in reshaping the human condition. One day I hope to be the person who finds the cure to all disease. I get that it’s optimistic but this is my vow i will save somebody’s life, and free them of struggle.
@@lightmycandles2337 just have my baby and she has sickle cell diseases now l know why l been feeling so sick true my whole life obiosly l have it and give to my kids 46 and let me tell you l feel like am dying...trust in God go to catholic church talk to a priest...God bless you always
I feel exactly like Chris! I used to compare myself to other people and ask the same question "why am I not like them?" The way he described the pain as getting stabbed to the rhythm of your heart beat all that I can relate to... not having anyone to talk to about it when I was coming up. I'm 46 years old now and I feel blessed to still be here nowadays my pain is more commonly in my chest then my joints and that can be scary. Cold weather and stress are two things that bring on the worst crisis.
My friend died last week Tuesday, he had sickle cell anaemia, and I'm grieving. He didn't deserve to die.
I have sickle cell disease as well.. the pain is to the point where I’m hollering and screaming n pain. I hate it so much.
Thank you for sharing. Many people are not aware of this. The more awareness, the more people can make an effort to help.
I will do what I can to help people out. I believe that we can find a cure.
sorry bro ... just wondering if medical marijuana is considered as option ...i m frm asia and here medical marijuana is not an option ...my father suffers from constant back pain and i was curious abt this option
I feel you bro I have it to as of right now I am in the hospital now it is so hard to deal with it Sickle cell .
Does it hurt? Is it physical pain or mental? ❤
@@rahabjericho3175 of course it hurts. Physically and emotionally.
To me living with sickle cell disease is a blessing. It opened my eyes to reality, made me be closer to God and impacts that humanitarian feeling in me that I wanna help anyone who's not just with sickle cell. 4 Every Pain before receiving treatment I coax myself and comfort my soul with words from Quran n Bible and say to myself YOU ARE GONNA GET THROUGH THIS AGAIN LIKE THE WARRIOR U ARE💪❤
Scientific research can help us get a cure.
I have sickal cell and when I have it I experience extreme amounts of pain in my bone in sometime of my life
That's why my mum gives me this tablets to stop it
I been really alone dealing with Sicklecell alone and I'm not to sure how to deal with the depression that comes sometimes.
@@samanthaowens5854 please don't give up I also have sickle cell and it's hard so hard and can and will bring you down but you can't let it isolate you in a state of depression.
I have a child with critical sickle cell anemia and I know what you are going through , I didn’t have the courage to talk about it but seeing you warriors am telling my child’s journey . Thanks for sharing keep safe en fight.
I don’t have sickle cell, but I have 2 muscle diseases which cause 24/7 pain. Well done Chris, people have no idea what it’s like to live with a chronic condition and be in chronic pain every day. The worst part is when the hospitals send you home, and you’re still in pain. I get it. You cannot adequately describe the pain and the tiredness to people, that’s why most people keep it to themselves. Sickle cell anaemia needs to be as relevant as Diabetes and Cancer. You should have a sickle cell challenge, like the one with motor neurone disease. Raising awareness is the key and you’re doing an awesome job. Keep going.
I wouldn’t wish this on my worst enemy. The pain is indescribable!
Thanks for raising awareness!!
Awesome video! I as well have Sickle Cell SS, and live in the US. Treatment here can sometimes suck!! Hope you guys are doing well!
Hye im French ss sickle cell. It’s suck about what in us ?
I am a sickle cell patient from nigeria a country in western Africa. You can only imagine how horrible how treatments can be but we keep staying strong
I hope we get a cure, we can do it.
Great work I also have sickle cell and I'd love to see more about sickle cell on the tv, you see alot of everything else. 💪🏾👍🏽👊🏾
My brother is in an induced coma right now due to a crisis. He's been getting blood transfusions and is on a ventilator. 2 of his organs are trying to shutdown so they are talking about dialysis.
His hip has already been replaced many years ago whilst he was in his late 20s. We never knew that it was related to his sickle cell disease.
i wish i could talk to these guys!
i can relate on so many levels and its good to know you aren't alone in this fight.
In this part of the world (Africa) where there is a lot of misinformation and stigmatization you can only understand how "Normal" it would be to keep it all bottled in... even from family members and siblings sometimes..
This was a breath of fresh air! Got a whole lot more on my mind but i am wishing all warriors out here great health!
Stay hydrated and do a little exercise
It hurts to go through it
Wow I have it too. It's cool to see others with the same condition. My pain feels like my insides are twisting and sometimes like frozen ice shards are circulating through my body. I workout a lot so sometimes it triggers the pain more but I'm grateful I have enough fortitude to continue to better myself despite my condition.
WHY DON'T WE TALK ABOUT SICKLE CELL DISORDER
Sometimes, we are just tired of telling people we are having pains almost every day,
Sometimes, we do not have the energy to talk,
So we say we are fine even though we are not fine with the aches and pains,
Sometimes, we do not want to be a burden or distraction to others,
Sometimes, we think people may find it difficult to believe us,
Sometimes, we are tired to discuss it with anyone,
Because we pre-empt admitting it to people,
May require us to answer more questions to describe the pain,
And sincerely, we need to conserve the little energy we have left,
Especially when we have fought the aches and pains for long,
But the aches and pains still stayed stubbornly and severely,
And sometimes, we say we are fine,
Because in order to survive as a sickle cell warrior,
We have learned to endure and manage the aches and pains.
There may be other reasons,
But at a point,
Saying you are fine maybe your best option to preserve your sanity.
Diary of a Sickle Cell Warrior.
© DSA
@ December 2021.
Sickle cells disease is important to know about how blood shape into half crescent moon which causes a pain crisis. I’m Radhika I have sickle cell trait and have a chronic condition which I can handle myself.
Is everyone.ok during cvd ???
I been taking risks no mask no sanitiser, on the bus on the trains.... has anyone else managed to avoid infection.....
Im curious because I heard cvd might be similar to malaria... so im reaching out
You should have HYDROXYUREA 500 mg which is also know as Cytrodox.just contact to a hematologist specialist.
I'm asian Pakistani and have thalassemia minor and even that effects my life feel very fatigue at times.
God bless us.
HBOT therapy can reduce pain into Sickle cell anemia . But HBOT therapy is unsuccessful for a lot of chronic conditions itself.
I don’t know but recently I’m a bit scared to die because of this...
I have a report to do against a judge who just ignore a Sickle Cell Anemia mother.
My husband of 15 yrs has sickle cell and my thirteen-year-old daughter also has sickle cell and our 9 year old daughter has the trait we're actually in the hospital for a crisis right now we've been here for the last week I see what he goes through and this is a horrible disease to have it when we first met he didn't want to tell me that he had it cuz he says he doesn't like the way people respond because people don't know about it and they think it's something that they can catch I've never left his side when we're in the hospital I spend the night with him except right now because of covid-19 spend the night by spend the night with him every single time he's been in the hospital every single day we're in the hospital so much our daughters know how to silence the machines they know how to go get the nurse they fight over who's going to silence machines and I actually know when the fluid drip is about to be done. the worst experience that we ever had was we kept talking to a doctor about the sickle cell and he made a comment and said maybe they should just stop working on a cure or treatment for sickle cell
I wish you and your family the very best!
Hi I have two sons with sickle disease. I want talk other parents. Let then it going ok...It not easy at....God has always there for son s ...
Thank you for sharing. Through scientific research we can find a cure.
I believe that the questions to answer are why do the blood cells get that shape and how do we get the blood cells to be in good shape.
I DON'T have sickle cell anemia but it's interesting
I think I might've got sickle cell anemia misdiagnosed as mononucleosis. I know I don't have any sexually transmitted diseases, because I've never had sex. Even though I am most likely 75 percent European American, and most likely only 25 percent Asian, Hispanic, Latino, Black, and Native American, I still think I was misdiagnosed as mononucleosis. But I do feel very feverish at times though.
I'm in the UK and have a critical case of sickle cell
well conversation regarding sickle cell anemia, More over Need of Blood in sickle cell patient to Prevention Crisis .Not Only American Middle East also LOT of patient suffering sickle cell .Lets Move together to promote Blood donation
More stories like this!
I just recently found out that I have the trait in Navy basic training. I wish this video talked about the difference between having the trait and the actual disease.
Sickle cell trait AS
Sickle cell disease SS
Normal haemoglobin AA. Sickle cell is all to do with the abnormal haemoglobin genotype S or C, but C is very uncommon.
Being AS and marrying a partner who is AS means your children have a 50% chance of becoming SS/AA. This strongly discouraged as it just continues the bloodline of S and its too risky. Being SS means you will at the very least pass the trait (AS) on to your child, and if you marry a partner with AS your children have a 75% chance of getting the disease SS. This should be unthinkable for SS patients. I know for myself I would never want my children to experience the pain, isolation and near death experience I have. I thank God that He saves me each and everytime.
This is my limited knowledge on the trait vs disease area but I hope this helps everyone who reads it.
The commenter above put it perfectly. To summarize, since you have the trait, if you partner with someone that has either the trait or disease, you run the risk of conceiving a child with the disease. If the child doesn’t get the disease, they will definitely get the trait.
That being said, I was born with the disease, both of my parents have the trait. I’ve been researching Sickle Cell all of my life, and there isn’t much said about the trait other than it can lead to the full blown disease.
My mom once said that she has pains sometimes that she believes is from the trait as she said it’s triggered by the same things that trigger crises (too hot or cold, dehydration, exhaustion, stress) but of course there’s no way to “prove” it, at least not that I’m aware of
@@StephAnnie994 Thank you so much for the info 🙏🏽
@@HaloHighlightz Thank you so much for the info and awww man. I’ve been doing some research as well. I only know 1 person with the disease and the things they go through are very challenging for them at times.
I have the trait and always had horrible leg and arm pain. I’m an athlete and you have to be very careful of dehydration and heat which can be dangerous for ppl with the trait. I still get horrible leg pains (have it even right now) mostly when I overwork and don’t drink enough water. Stay well🙏🏽
Have you ever been kicked in the nuts? The pain you feel in your nuts and all around your lower belly that causes those moments of the shortness of breath and pain... Yeah, imagine have that exact intense pain for hours, maybe days or weeks. That's the most accurate way I can describe the pain in my experience, like at a 90% accuracy the very least.
I've always done a lot of research to find out ways to permanently cure it, and there are two so far:
1) A BMT/Stem Cell transplant procedure: Basically when you replace your unhealthy stem cells with healthy ones from a more compatible donor. If you didn't know this yet, the bone marrow is the spongy tissue at the center of most bones that produces at least 90% of your platelets and white and red blood cells, so healthy ones means no irregular shaped blood cells meaning no SCD crisis episodes.
Pros: SCD, leukemia, immune deficiency disorders, aplastic anaemia all gone.
Cons: Expensive, can be unsafe due to rare compatible donors(because the most compatible donors are found in your direct family and barely outside of it...its very important you find one or else don't go along with the procedure), long procedure, obviously comes with the risks every medical operations comes with, you're most likely to inherit the allergies that your donor has.
2) CRISPR-Cas9 gene editing therapy: This is when a procedure is carried out to eliminate the genes that suppresses the fetal hemoglobin, then lets it be active in your adult body again. If you don't know this, fetal hemoglobin is usually present and active on infants, and are suppressed as they grow older, and it protects an infant who has the SCD from SCD-related pains and crisis episodes so they can grow as a normal, super healthy baby. This procedure has been successfully carried out in SCD patients who has proudly admitted to having no crisis episodes or anaemia in over a year since the procedure.
Pros: SCD gone, safer than a BMT procedure, no need for an external donor, more research and techniques are being put into this by scientists and doctors to guarantee a safer and less expensive procedure that'll let you leave a healthier and happier life, so stay alive for idk...10-15 more years, you can do it, just keep doing what you're doing now and you'll be fine.
Cons: Still in clinical trials, currently expensive, like every other clinical trials involved in the field of medicine, there may be unknown side effects (I'm not totally sure).
Ways to prevent the crisis episodes:
1) Take your routine medications, I'm talking Vitamin C, folic acid, Vitamin B complex... according to your doctor's prescriptions of course.
2) Take your crisis medications at least every 3 days if you've not had an episode in a while, I'm talking Hydroxyurea, Drepanostat(Hydroxymenthylbenzoic acid, yeah that's the name, don't try to pronounce it though lol) plus your routine medications and Incase you feel pains, take your ibuprofen or felvin and predinsoline(I hope I spelled that right), Cimentidine(because these pain relievers can cause uncomfortable pains at the top of your stomach as side effects). Again, these has to be discussed with your doctor.
3) Discuss with your friends and see if they have any advices, if you can't or won't do that, at least get one of your trusted family member or friend to do it for you because there are some people who can handle their episodes without regularly getting blood transfusions or being rushed into the ER almost every week, so having a chat with them can help, and of course don't just go ask anyone...
4) Stay in an oxygen-rich atmosphere, don't go around playing sports, workouts or other forms of exercises like rock climbing longer than 10-20 minutes.
5) If you're in school, tell the administration about your health status and show them a medical report if possible, the goal is to minimize your participation in sporting events, PE classes and similar stressful activities.
6) You know those things you like doing? Those things that makes you happy, do them a lot, ignore whoever that tells you otherwise because they have no idea what it's like to be you, if you like reading books, staying indoors, playing video games, watching TV or movies, go ahead, do them...just remember to get up and move around every once in a while(yeah I'm talking to you gamers with SCD), the goal is to be happy, a happy mind gives you a health mindset which makes your body feel healthy.
7) If you know a person who's living with the complications, give them all the love and support you can, always be there for them, and no matter what they've done to enrage you, don't take it all out on them. The best way I can put this and sorry if this triggers you: give them the same love and support that you would do for your wife/girlfriend who is on her period, you know why? Cos some of them have a psychological way of showing that they're trying to figure out why they are the way they are, always sick and weak, being seen as incapable, and still having to deal with all the pressures of life itself.
So stay happy and healthy 😉
There's also this blood booster syrup that I usually take, I don't know the name, if I did, I'd have shared it, but I think it is sold at some parts of Enugu Nigeria... I've never had a blood transfusion in 2 years since taking it, and my blood count stays at 70-80%. It's usually 74ish...
I only take it during my crisis episodes and my doctor approves it.
@@maximusoctavus6843 is it possible that you can get the name of the blood booster?
Thanks for this, it means a lot.
I almost lost my son to SC if it wasn't for Dr. Ehi who helped me cure my son's sickle cell anemia. I was led to believe by doctors that there was no cure, but now I believe otherwise because my son was cured from South Carolina at the end of 2018. I found comments on how someone cured his sickle cell anemia with the help of Dr. Ehi, at first I didn't believe because I wasn't so sure, but I still went ahead to try. I contacted the Dr. and told him everything and he told me that he will prepare me a herbal medicine that I will give to my son, and a few days after we had this conversation, he prepared the medicine and sent it to me. After 2 weeks of using the herbs as instructed by the doctor, I took my son in for a checkup with no reassurance but faith, and lo and behold, the results came back showing he was completely sickle cell free. You can also contact this exceptional doctor via email: (drudebhuluspelltemple@gmail.com) Call or WhatsApp +234 705 703 4263
Hi how are y'all doing know? I want to ask y'all want doctor do y'all go to
We are the black sheep of the medical world
Help guys am dying,am in Africa and there is no treatment,am in Ghana,hurry to my aid please
I have sickle cell
i just love the way african people laugh ..they r soooo full of life
This does NOT only happen TO the
AFRICANS..because I've
been reading about the
Symptoms..& i have them..
.ALL the LISTS.it's time for
me to see my doctor.ASAP.
You can get a blood test to confirm if you have it or not
@@HaloHighlightz should i
go straight to the ER or
to see my doctor for this
Problem!??
@@chengfusaechao7243 it depends on the severity of your pain, as well as your country. If it's horrific, go to the ER. However, if it's not, make an appointment to see your doctor. ER visits can be costly here in the states when they start running diagnostic tests, even with insurance but cost might not be an issue for you
@@chengfusaechao7243 go to your primary. care and ask.
Hey! Hope all is well. Did you get tested for sickle cell yet?
i find it really interesting that this disease is hereditary and often in black people but no one talks about where it origins and how because if two adults know they are carriers why have kids together and carry it on when there is so much evidence that tells you before you continue the pregnancy if you are a carriers so why continue it this might sound crazy but i genuinely don’t get it
This pain can lead to your death and to describr the pain is something one can't put to word and u can't tell anyone and you think you're different from others , so isolated , you lose friends . Nigeria health care sucks and pain medications now don't work anymore
Makes you feel inferior to your mates, just cuz you can’t do the same things they can
I think I might've got sickle cell anemia misdiagnosed as mononucleosis. I know I don't have any sexually transmitted diseases, because I've never had sex. Even though I am most likely 75 percent European American, and only 25 percent Asian, Hispanic, Black, and Native American, I still think I was misdiagnosed as mononucleosis.
Solomon Porter 0:15
nobody appreciating the anime
What anime?
We have evidences.
With the risks I've been taking i should have caught CVD by now .... yet im fine
DOES ANYONE ELSE HAVE A SIMILAR STORY...im curious and confused .
I guess I could say its my own experiment... call me stupid but I cant help it.... my life went down hill a few years back and with cvd its pointless.
Why black blood donors? I don't get it 0 Rhe negative can donors to everyone.
Because blood type is more complicated than just ABO and +/- Rhesus! There is a lot more antibodies/proteins attached to the blood cells depending on where you are from, if you're blood related...
Ultimately, It is always better to have the most compatible blood (or any Bio-product) from donor to receiver. Since a lot of the patients are of African decent, they're asking for donor from African decent too.
I mean, the video literally says that ethnicity matters with a lot of transfusions, donations. It’s all in order to protect the patient and give them the best chance at increasing their quality of life.
Permanent testament shuru hona chahiye...
I pray that GOD'S healing power through the Holy Spirit heal you and your bodies produce produce normal blood cells. I pray that GOD reveal herbs to stimulate normal blood cells in the name of Jesus Christ. I have witnessed sufferers and have the burden to pray that GOD reveal healing and cure to His own glory 🙏 Stay blessed in your spirit, soul and body 🙏🙏🙏
The serious whip corroboratively scrub because halibut postmeiotically object by a inexpensive geology. towering, military ruth
Why is everyone with sickle cell hot and a weeb?
@Dorris Tammy stop this shit!
That disease is so cringey it's not even funny yo😬😬
It's the most painful thing, you go bed feeling ok, in the early hours in the morning your up in pain you feel you can't breathe because of the pain, hands swollen and the throbbing don't stop, you can't move, movement is a no go. I wanted to let others know the things we go through. Yes!! I totally agree we are warriors.
We have sickle cell, but we are not sickle cell. Education is the key, and no you don't catch it like a cold. Be encouraged all who go through this experience.
@@deborahthomas7970 I know, very soon this will be a thing of the pass Revelation 21:3 & 4 Take courage!
Great so the NHS has got to pay for this.....
Are you ok... has cvd affected you or anyone else you know.with sickle ?
Im fine ... been taking serious risks and haven't caught it..... so im reaching out for similar stories.
The NHS is amazing for understanding sickle cell disease but there a lots of things out there treatments , pills also therapy’s . It’s about time people should accept blood donors for having sickle cells.
@@chasingthesun90 Great Answer.
Yes, but don't worry, cause with the way you're sat here typing I doubt it'll be your so called money to make the difference