A Note On Sickle Cell: Dark culture of Genetics — Suffered by Sickle Cell Patients

Fact or Feeling

I have been hearing the most abhorrent rhetoric around the past year about the African relationship to sickle cell and even further the black diaspora’s “learned” relationship to how best ‘combat‘ the pain. None of it has been relevant to the conversation. People have been speaking about Marriage and relationships and a bunch of Eugenics that give me the Heebie jeebies.

Eugenics is a big part of the black community because when we were treated like cattle that’s how they reared us. A big strong male would procreate with a strong female and they’d make “physically superior genetics”. In doing this generations have passed and we have the American Black — and I feel it’s engrained into our psyche to treat each other like animals trying to up our stock in a genetic pool — Epigenetic’s.

What does this have to do with Sickle Cell ?

People have been treating the mutation like it can be avoided by simply not starting families with people who may have the compatibility to make another child with Sickle Cell. Doesn’t matter how much you could love this person, you believe “in good conscious” you cannot start a family with this person.

This turns me off a whole bunch, these things are not so easy to “avoid” or amend. Haemoglobin S was a mutation to combat malaria millennia ago. Considering that when we look at the numbers half the black population in the UK carry the gene or can carry on the gene. In America there are about 100,000 people who deal with the Mutation, when we think about propagation and distribution this number can double, some things aren’t as easy as people make out.

I want to use an example of our people that’s incredibly more sensitive to say. I would not hear someone say out loud ‘Don’t Marry someone with albinism if you don’t want pale Ebony children’ you would never hear that because it’s ludicrous. Albinism is a natural rare occurrence that happens to black people and they should be respected as human and just as black as the next person. I wouldn’t hear the same with diabetes or High blood pressure or Heart disease, these are real things we have to deal with right now.

The Stigma for Sickle Cell is worlds apart it seem, people have a certain way of coping with diabetes or High Blood Pressure maybe because it happens later in life and in that it’s put off – or maybe you don’t think it could happen to you. – I just see this strange play on the community made out like it’s possible to be rid of something with 5000 years of lineage in a couple of generations.

If you get into the science of it there’s something off about you disguising something selfish and painting it as something altruistic. There’s so much dark psychology buried in here that it would be very hard for me to unpack in a singular Essay, I want to keep this novel and hope the point gets across.

But there’s no science in if you avoid dating someone with compatible genetic make-up you will “defeat the scourge of sickle cell”, no

What can we do as a people?

I want to just say, if you decide you want a relationship with someone and they happen to have Sickle Cell there are just some thing’s you’ll have to deal with and there are points in your time together you’re going to need a strong constitution and not everyone has that and there’s nothin wrong with admitting that. However if you do keep it together because often times people with HaemS stay strong for their partners but we definitely need support at times like any other relationship that happens to go on and as thanks we give support when we’re healthy. On God there are times it won’t be easy so if you say ‘I don’t want the stress’ or you don’t think you could deal with someone you love in pain (at certain times) then yes obviously have the right to do so.

May the spirit of Allah be on the healthiness of your offspring, however if your child was born will an inalienable condition like Cerebral-Palsy, Multiple Sclerosis, fibrosis, Scoliosis you would not say, people who have such conditions which run in their family shouldn’t marry your child as to not make more children with that condition. I feel like this line of thinking is a very slippery slope and if you want a kid and they are born with a condition I hope that you have the wherewithal to bring from within yourself the right substance to raise that child like a true parent.

Another problem I have is the abortion of kids where you discover prenatally they have a condition — the presupposition being you want a kid — and you choose to abort that child. This is such a moralistic debate that I cannot with my whole spirit bring myself to have such conversations about humanity in text. That is between you your God and your Consciousness.

I don’t say this for me, I say this for all the stories I’ve heard about people who loved each other and were going to get married and beautiful black men and women who so terrible want to be in relationships with a great person well suited for them and they make such a cold and callous decision because of genetic marker.

Whatever Moves Your Dial

Damilare. Not Your Typical

Thank You For Reading… Please read my other Feature blogs:

A Dose of Optimism

A Portion of Humanity

Global Invisible Disease

Living Through Crisis

What Is A Crisis

And visit Sickle Cell Companion  for all my other literature on Sickle Cell


I want to connect and contact people that want to know more, here’s how you can connect with me

Facebook: fb.me/nytypical

Instagram: @nytypical

Twitter: @nytypical

A Note on Sickle Cell: The Addict Stigma & Opioid Crisis ‘We are in pain not addicts’

We go again,

While in pain the fastest course of action is Painkillers from Paracetamol to stop a fever and Ibropofen to quell inflammation all the way to Opioids to numb the whole body completely from the real excruciating pain of a crisis.

With such pain it is very important it gets dealt with in haste, however Sickle Cell patients have to deal with being thought of as an addict as they have to use high caliber of drug to deal with insufferable pain. Most of these medications are not available to the general public, as a Sickle Crisis sufferer you are taught from young to stay informed and be vigilant about your medical condition so having such information can be seen as a catch 22, that being said should it really be at the cost of the sufferers?

This particular blog addresses the stigma which tells doctors that Sickle Cell patients are PainKiller addicts on top of not believing black pain as detailed in a portion of humanity — (please check out the blog as they relate heavily) they believe that Sickle Cell patients present as Opioid addicts — this causes some of the patients to have longer wait times and to be tested to ensure to the Doctor in question this patient has Sickle Cell.

These prior exams have a negative effect on patients, further research shows there is no president for Sickle Cell patients ever being addicts. A study shows patients are less likely to get addicted to painkillers due to the natural nature of the pain. All the while America is in the middle of an “Opioid Crisis” and more and more people being hooked on prescription pills like Percocet’s Oxy and Codeine all of which are exactly the pills used to handle chronic pain making it really bad new for Sickle Cell patients who have been lumped in with abusers.

A great deal of Sickle Cell patients as well as I, dislike having to rely on taking certain pain medication more often than not those sufferers who decide to hold off taking pain medication until the last moments. Pain Killers do not cure anything on the part of the patients there relieves the pressure of pain; some situations end up like my anecdotal evidence in Living Through a Crisis.

I have been looked at as an addict more times than I have actually been treated for my pain; prior to ever getting proper attention to my medical emergency, this irks especially when there is no basis scientific or factual basis of this more often than not its a ‘pseudo-analysis based on what presents as signs of addiction…’ I want to changed that.

I do believe though that opioids do not need to be the only solution, Sickle Cell Pain  is a symptom of the sickling of blood stuck in the blood vessel; the pathway is blocked so it causes irritation then further pain. That being said painkillers are used to stop feeling the pain while the Sickled blood runs its lifespan.

That being the case there must be other means to help your body stop feeling the pain or to effect the pain area directly. We can only wait for more clinical trials and better studies for how to beat treat this pain and for now it is controlled drugs. There are Studies with Cannabinoid (CBD) oils engineered to help patients suffering with

More information on the studies referenced

Mistreatment of Sickle Cell Patient

Further Reading: Research Study: Opioid crisis adds to pain of sickle cell patients

Whatever Moves Your Dial

Damilare. Not Your Typical

Thank You For Reading… Please read my other Feature blogs:

A Dose of Optimism

A Portion of Humanity

Global Invisible Disease

Living Through Crisis

And visit Sickle Cell Companion  for all my other literature on Sickle Cell


I want to connect and contact people that want to know more, here’s how you can connect with me

Facebook: fb.me/nytypical

Instagram: @nytypical

Twitter: @nytypical

 

A Note on Sickle Cell: Living Through a Crisis — A Fragment of Reality

We help grow understanding,

This blog is terribly hard to write and I have been fighting my conviction to it, thinking to myself maybe pick something, relatively lighter or more informative that people will understand.

The reason why is because I am about to speak about something that’s felt, it is the very real insufferable and intolerable pain of CRISIS as it’s been dubbed by doctors.

I took my time and spoke to my counsel of advocates as I was unsure of what benefit this would bring, they unanimously assured me this needed to be wrote about.

Without further preamble let me explain…

What happens to the body

Crisis is when your body is in shut down mode. What happens physiologically is red blood cells mutate, this mutation stops them from being able to carry oxygen and become sticky. They stick to blood vessels and others cells that have mutated, restricting blood flow through the body and that blood blockage is the cause of the pain.

These cells can live up to 8 days, the pain can last much longe this pain that we suffer though is almost invisible but it exists and this puts it in the category of invisible disease as we can be in pain without it showing on medical instruments

Suffering Through the Crisis

There are many different level of pain, crisis is the highest. There’s nothing many of us fear more than the pain our own body can produce, some of us so much so we take high level precautions before leaving our houses.

This pain can have you spinning and turning, writhing uncontrollably in your bed and want to be perfectly still at the same time because movement causes pain but stillness also causes pain.

The pain will have you breathing out of rhythm trying to catch any sort of breath due to the shock of the pain some of us are due to faint.

The only thing that separates you from ease of mind is the highest doses of opium; these are almost lethal doses to some, for us it is but a means to an end.

When it feels like the medication has finally kicked in to what’s known as a codeine coma but you won’t sleep, not till your second or third scheduled dose; you feel that moment of relaxation and separation from the distress your body is going through sometime after that third dose you sleep

Suddenly you are jolted up immediately you don’t know how much time has past, it doesn’t matter, the opioid has wore off and its back to step one… it’s time for your next dose; there’s a problem though, you are in the most comfortable position you have been in since the pain started.

Your numb body distracted you from the fact your arm is now paining, you feel the buzzing and fear of you stretch it that buzz will turn to a sharp stab, can you even pick up the water bottle now? Doubt it. It’s 1am no one to check up on you for hours, the fight through the night begins.

If you are in the hospital you will have to press the buzzer multiple times, home? How can you shout? You don’t have the strength, your phone, it’s somewhere here but you have to conserve movement to the minimum. Fuck IT! I’m sliding this bottle to my face and if it spills, it spill, ‘I’m a pro’ you tell yourself. Fuck it let’s go, use all your grip strength in your one better arm to open it, spill drink down your gullet and swallow the pills. — This is all in the first minute of you waking up.

I could go on. It’s a fucking struggle, as I write this I understand it’s pretty much only a home experience not a hospital one, I will share a hospital experience but at a later date.

This blog really took a lot out of me and this example of trauma is not unique I assure you; this happens weekly to someone and they deal with this. Which is why we call ourselves warriors because that fight is not an easy one, Death is waiting right there for us to give up on life but we choose to fight every time.

Whatever Moves Your Dial

Damilare. Not Your Typical


To get in contact with me find me on

Facebook: fb/nytypical

Instagram: @nytypical

Twitter: @nytypical


Thank You For Reading… Please read my other Feature blogs:

A Dose of Optimism

A Portion of Humanity

Global Invisible Disease

Addict Stigma // Opioid Crisis

And visit Sickle Cell Companion  for all my other literature on Sickle Cell

 

A Note on Sickle Cell: THE GLOBAL INVISIBLE DISEASE — 5 Things You Need to Know

 We Help Grow Understanding,

Some may or may not know about it, this is a terrible state of affairs, I wrote about how Sickle Cell Patients are mistreated under medical care, where people are supposed to feel safe and looked after in A Portion of Humanity that makes me wonder why? Why would people get treated this way, and what comes down to it is a lack of education.

The Scope of Who it Effects

When people think its just a black issue because of the disproportionate reports by black people it leads people to believe this is a purely black issue and whatever biases take over from there.  IMG_5017

Sickle Cell is a worldwide mutation its not something easily fought or shirked off. Deriving from areas that mosquito feed the mutation evolved to counteract malaria which mosquitos carry; the effects of these bought about some changes within the chemistry of those native to these areas.

Contrasting Views of How Similar illnesses are dealt with

As you can see this condition affects people in India and the Middle East as well as South America its not just a black problem but it is something we talk about enough that gives me the hope we can do something about it and add the different cultures into the mix. There are more people with Sickle Cell Trait than there are with Multiple Sclerosis & Cystic Fibrosis combined in the UK.

I do not see how this is not a bigger conversation and how I can find advanced campaigns  of how MS effects people in the winter and so forth but there can’t be one with Sickle Cell; what is especially great is the way they’re building awareness, there’s just a stark and obvious contrast in how they’re perceived globally even though one can effect more people than the other. It’s great what they’re doing with MS, we would really love the fight to be taken seriously with Sickle Cell too.

A Brief History of Western Understanding

Sickle Cell has thought to have been around for 5000 years yet it’s said to have been “discovered” in 1910 by a Dr. Herrick in the America’s; Sickle Cell trait “discovered” 1927 by pair Hahn and Gillespie — it wasn’t until around the 50’s where more significant progress was made Nobel Winner Dr. Pauling & Itano who broke down the understanding of what we know about “Molecular Disease” (diseases that have proteins with abnormal chemical structures); Sickle Cell being the first of thousands.

The 70’s bought about “genetic Counselling”, with a smidgen of eugenics where organised thought and teaching spread some propaganda in the African and Caribbean communities that have now become part of the cultural fabric… You don’t hear accounts of “Sickle Cell” before western medicine started talking about it, nothing black people done or may have done for it is not recognised in. the medical zeitgeist; along with the destroying of a long documented history there are many things we still don’t know about ourselves.

Cultural Measures Taken to “Avoid” Sickle Cell

What I’m talking about now is the cultural setting and how medical conditions are treated in the black community all around the World. We don’t take our medicine or intelligence seriously because its not accepted by the powers that be within the institutionalised imperial system that is the European Health Care system. That being said we still don’t know much about Sickle Cell, not much work is done for it and culturally it is preferred Sickle Cell is bred out than propagated.

Although it is a 5000 year mutation people believe it can now take a generation to get rid of it; colour me skeptical but that doesn’t sound very much of an effective way to handle it, I’m not trying to control what people do with their bodies but I don’t think Abortion of a child which you find out has Sickle Cell prenatally is a solid measure either. I feel there are better ways to Handle this 5000 year (at least) mutation.

Broadening the Conversation

I believe that although the history was ripped away burned destroyed and disrespected we can look forward to deeper understand what Sickle Cell is. Most people who look into it either have the Gene, the Trait or know a family member that has it. All round 15,000 people have it in the UK that is 15,000 people whom have a chance of getting mistreated by hospital staff Thats 15 thousand too many and another 250,000 who can help or are too scared to but have no way to help; who think their only duty to their family bloodline is to make children who don’t have Sickle Cell.


Editors notes

These points are really too basic and just spread propaganda about the condition with no real ‘Scientific basis’ although the pseudo science is accepted among the whole African and Caribbean culture. It needs to be stopped and the conditions need to be taken with the same seriousness, this is something I will have to explore in the next blog.

Whatever Moves Your Dial

Damilare. Not Your Typical


To get in contact with me find me on

Facebook: fb/nytypical

Instagram: @nytypical

Twitter: @nytypical


 

Thank You For Reading… Please read my other Feature blogs:

A Dose of Optimism

A Portion of Humanity

Living Through Crisis

Addict Stigma // Opioid Crisis

What is a Crisis

And visit Sickle Cell Companion  for all my other literature on Sickle Cell

A Note On Sickle Cell: What Helped me Help Myself — A dose of optimism

We go for great,

I used to live my life reactionary to what people thought of my medical condition. I was used to it, so I disengaged early, I wanted to be a normal kid. I did grow curious, some part of me grew to seriously ask myself questions — wanting to understand if what people thought of me through the lens of my condition was the me I actually am — the look of like I’m suddenly part of a lower subset of human; the look of as if I live like a man on death row; the look of a decrepit helpless man. This is the look I find in their eyes.

All those looks were not controlled by me, it would have some very negative effects this fuelled me wanting to find the truth so I did my first ever “Google’s”. My first mistake, (never try find true documentation with the highest google answer). This would play on my mind for a while till I took a real look at what the findings were, I didn’t just search up on Wikipedia or the NHS website I would start to read medical journals and see how it is defined. My findings concluded, its not a death sentence.

(Even further I have come up with hypothesis on how to treat it; that is for another blog. )

How I saw myself looking after my body was different. I didn’t automatically start treating it like a temple. What I knew though is with strong bones, a strong body and cardio vascular system your quality of life will have levelled & or better than the next guy because sickle cell puts you in the position to have to live to a higher standard of nutrition as a basic prerequisite.

With all the people I have seen with the condition (numbering in the hundreds) those with less complaints eat a balanced diet go to the gym to move weights and don’t make reckless decisions, those with the best life have THE BEST LIFESTYLE. I want to stress it does not absolve crisis, it helps the pain tolerance to be higher because the body is generally in better shape and used to the stresses of those physical activities. So the friends that look ‘perfectly healthy’ will participate in sports activities and or socially drink and don’t “look like” they have sickle cell till they tell you look after themselves to a very high standard. Everyone though is healthy till they are not.

This means being an active participant in your health. I listen to my body and assess the situation, when I do that I have better control of my days. I’m not saying there aren’t days I can be gripped by pain, not at all. I know what’s best for me and what’s not so good for me when it comes to activity.

I feel great daily if I look after my body daily. This is something all of my brothers and sisters to know, I’m not the biggest guy but I started with the smallest weights and the shortest session but slowly year after year I gained more inner strength to compose myself and try out for my university Gymnastics team. Being very honest it was the best decision I made as an adult. Making sure within myself that this is my own body I own it, my identity is what I make of it, Sickle Cell is not me it exists while I’m alive but it will not condemn me to a life of fear and destitution.

If this makes sense pass it on, just like the death sentence disease idea that was probably passed on hand this piece of information over too, instead of looking at friends and family with desperate despair maybe this dose of optimism will do you all some good.

Whatever Moves Your Dial

Damilare. Not Your Typical


To get in contact with me find me on

Facebook: fb/nytypical

Instagram: @nytypical

Twitter: @nytypical

Thank You For Reading… Please read my Other Feature blogs:

Living Through Crisis

A Portion of Humanity

Global Invisible Disease

Addict Stigma // Opioid Crisis

And visit Sickle Cell Companion  for all my other literature on Sickle Cell