Hi people.

Two hip replacement surgeries later I'm grateful to be here.
I'm not yet at 100% but I will be.

❤️❤️

Suddenly remembered this little community here and I decided to post this.
Remember that sickle cell struggles are real and you should not make a child suffer for the sake of the love you have for your partner.

ACUTE CHEST SYNDROME (ACS)

Acute chest syndrome (ACS) is defined as a new radiodensity on chest imaging accompanied by fever and/or respiratory symptoms.

It is an acute complication of sickle cell disease (SCD) that is potentially fatal and requires immediate intervention regardless of the patient's age.

Various pathological processes can contribute to ACS, including infection, fat embolism, and vaso-occlusion. In practice, it is not possible to differentiate between these causes, which often overlap, so treatment principles are similar for all cases. ACS is clinically indistinguishable from pneumonia in individuals with SCD.


X ray findings in ACS can vary significantly, and it is not possible on X-ray alone to differentiate between ACS and pneumonia.



RISK FACTORS

Some patients are at higher risk of developing ACS:

-Genotype: HbSS and Hb S-beta0 thalassemia are at highest risk

-HbF percentage – higher HbF percentage is protective (infants, and those on hydroxyurea therapy)

-Comorbidities – asthma, recent surgery, chronic sleep apnoea

-Environmental factors – ACS is more common in winter months due to cold temperatures and higher burden of circulating viruses. Tobacco or cooking smoke in the household increases risk.

TRIGGERS

In many cases, a "trigger" can be identified for an episode of ACS. Sometimes multiple triggers are present, and sometimes (30-40% of cases), no trigger can be identified.

Triggers are important to identify, because treating an underlying trigger is important to managing an episode of ACS. These are most commonly:

-Infections:

-Viral
-Streptococcus pneumoniae and other “typical” bacteria
-Mycoplasma species and other “atypical” bacteria
-Asthma
-Acute SCD pain

MANAGEMENT PRINCIPLES FOR ACS
-Admit to hospital and monitor closely, especially oxygen saturations
Ensure regular monitoring and documentation of saturations, respiratory rate, auscultation findings, use of accessory muscles, mental state, colour and perfusion.
-Pain control is a key priority : pain makes patients breath less deeply, and exacerbates ACS
-All patients with ACS need broad spectrum antibiotics, since infection often plays a role in causing ACS.
Antibiotics should not be delayed while seeking cultures/Xrays/other investigations
-Fluid balance should be monitored closely, including recording daily weights.
Many patients with ACS require blood transfusion to improve oxygenation.


This is just for education purposes,note that every warrior should see a hematologist from time to time for proper management.

Hello everyone .
Good evening. As always I'm here to lament and rant.
Apparently, No one told me registering for NYSC as a sickle cell patient is damn stressful. I had to start looking for my doctors phone number, address,even medical and dental council of Nigeria (MDCN) code, etc.
The embarrassing part was the part that they were asking for the contact to be called in case of emergency or death.
Death for crying out loud!!.
Shey won fe pa mummy won si camp ni?.
I sha hope I get it done tomorrow coz they say portal closes on Tuesday and I don't wish to carry over service year till 2024 . Put me in your prayers.
Thanks for reading.

Peace ✌️✌️

*FACTS YOU NEED TO KNOW ABOUT YOUR HEALTH*

� You are the number one stakeholder in your health

�Your health is what you eat

�Your health is what you drink

�The way you think will affect your Health

�Your Health will affect the quality of your life

�Your health will determine how long you will live

�The number of people spoons and knife killed are by far more than the number of people Guns and bullet killed

�Nearly every disease or ill health can be reversed if you change your lifestyles, by changing what you eat, drink, smoke and how you live and relate.

�When health fails every other thing takes the backstage.

�Your health is your greatest wealth.

Remember no medical or traditional healer will treat you for free when that serious health challenge occurs.

*Health Tip*

Avoid putting your bare foot on tiles or cemented grounds for a long time

Most of your nerve endings are found under your feet.

When it gets in contact with prolong coldness,it diminishes blood supply and reduces nutrients and oxygen supply.

The reason why the white have bathroom sandals and bedroom sandals is for a good reason.

Today, lot of people have all kinds of arthritis because of this.

Modernization comes with it's associated health challenges.

Therefore, move with time.

GOOD MORNING

�️�️�️�️�️�️�️�️
It's a sad time in the sickle cell community as we lose another loved one to the cold hand of death.
Every loss is painful but this one, this one feels like my heart was ripped ooen and broken �.
She was a good friend, a lovely person, a sickle cell advocate (the type that never stops talking and educating people), she was a fighter, a vibrant warrior with a heart of gold.
A priceless human being.
A Lady with balls.

That's the gem sickle cell stole from us this time, the gem it stole from me.
I was first in denial, then the tears started coming.

I love you my friend,
I'll miss you
You'll forever be in our hearts.
Rest on Pharm Fadeelat ��

sweetcoral:


i wish you good health dear

Thank you. I've just experienced a bit of relief3

And again I left y'all for months.
Emabinu
I'm sorry.
Work has been overwhelming.
And right now we're at it again, yunno the usual crisis.
I don't want to go into details.
I don't have the energy but it feels like it's going to be a brutal episode so let me go and brace myself.

Enjoy the rest of your day.
Peace ✌️

The crisis I had this week was like i had felt nothing like it before.
IT WAS INTENSE
I know I should start this story from the very beginning but the situation I found myself in before that crisis began is still something I'm really ashamed of. So please bear with me.
I traveled on Monday in great health and got to my destination in status quo. Around 8pm the heat was pretty much and I had taken a long walk so I took a cold bath and went to retire from the night. And two and half hours later (my eyes had seen very awful and mentally disturbing things between 8pm and 10:30pm) it started.
It started from my right knee,, I endured it for a while before taking the only Diclofenac tab I was lucky to find in my handbag.
Rather than experience a relief of the pain,, it skyrocketed by 3 folds and spread to my back and chest and waist .. That was when I knew that night was going to be a nightmare.
In few minutes I started to groan and grunt and wince in severe pain,, they drug was yet to kick in and I didn't even have another so I just had to wait. I waited for an hour and then 2,, still no change..
Then I joined hallelujah challenge on YouTube,, it ended 1am, and I was still in serious pains. Then I moved to WhatsApp and other apps for distraction. I finally was able to sleep around past 2am and I woke up around 5am with more pain in my back..
I wasn't in my comfort zone that night so I left for my place early in the morning . Got home on Monday and got infused with 1L of NS which helped a little wit the pain. Took an injection that night as well.
Wednesday morning still come with the pain but a bit fair,, took additional 500mls of infusion and more injections.

I was finally free of the pain by Thursday afternoon. This one episode robbed me of a weeks work, robbed me of being productive, robbed me of time and everything else i could have gotten done.
I didn't tell my parents about the whole episode until today and they are still very worried

The thing about sickle cell crisis is that each episode is never like the last one.
You never know the episode that will get you hospitalized.
You never know whether It's going to last for an hour or two or three or for a whole day,or for a whole week.
You never know when it's going to happen or where it will meet you.
You just never know...

Peace ✌️✌️

Hi.
So one thing I'm grateful for this year when it came to my birthday was that I was on duty that morning and i got home quite late in the afternoon so i didn't even have time to think about how i wanted my life to be or how horrible I am , or how lonely I am. And I think I'll just hope that the next birthday will meet me in a busy atmosphere as well.
It was as uneventful as last year but this year was different because I didn't have any expectations from people not to talk of raising those expectations.
I now think that's a really good way to live life.
HAVE NO EXPECTATIONS FROM PEOPLE AND YOU WON'T BE LET DOWN.

SO YES , I'M 26 and I'm happy �.

Peace ✌️

Hi NairaFam,
Good evening to you all. How have you been. I've been good �.
Most of the time i decline invites to sleep over in people house especially if such person is not a relative or a close friend who know my health condition. I don't honour sich invites because you never know when a crisis will creep in, AND there's no way to know if the next crisis is going to be a major one. So I always refuse..
Last week i got bored at my work and i was off for 4 days so i decided to travel and called a friend that i was going to sleep over. They were excited coz i had always declined visiting.
So i got there, and on the very first night , the evil i had been hoping would stay away crept in...


Then I silently went in, took PCM and told my host that I was taking it for an headache.
But the pain won't just go, and my observant host noticed something was wrong . I laters had to confess when the pains it got quite unbearable..
The thing i wanted to keep away brought itself to limelight and i couldn't help it,, I was so ashamed that night.
I still feel ashamed as I write this now.
But there really are some things you don't have complete control over.

*SIGH* ��

On a lighter note, it's my birthday in two days, last year was really bad as i spent the whole day crying about God knows what.
I really want this year to be different though. Well, it's going to be different coz I'm on duty that morning and that spells that I'm going to be busy.
This Year I WON'T CRY for any silly reason.
This Year I WILL BE HAPPY.

Have a great weekend.
Peace ✌️

[

yunqdady:

Congratulations.
You are strong.
Please, did you apply through an advert for Ido? Also, what conhess are Intern nurses placed on?

Please reach out to me through mail or my phone number. I think it may be better to respond to that there.

Please reach out to me through mail or my phone number. I think it may be better to respond to that there.

I want to talk about a lot of things ranging from the relationship between sickle cell and peptic ulcers to how to handle unsolicited advices from total strangers.
Meanwhile I want you to share you personal experience with people and their unsolicited advices.

HAPPY NEW YEAR 2022 FAM.

I am so excited about the new year and I hope you're too. I almost didn't go for crossover service last night but I changed my mind last minute. Been having hip pain since I returned from work yesterday but that's not enough to stop me.

I'm glad to have you all here with me this new and I pray we do great exploits together.

And Yes it's my birth month so let the countdown to January 31st begin. I really hope this years birthday won't be like the last.



Thank you for staying with me guys.

Peace ✌️

Good afternoon fam.

Back to my story.

Before I knew it, it was 2 weeks already which meant it's time to retake the test , so I did and result came out with PCV as 15% .
I was shocked, i began to tremble because I knew that no doctor would see that and not transfuse such Patient.
I took the result to the doctor the following week, and just like I assumed, he really wanted to transfuse me which I declined after he counselled me. Seeing that he was out of option, he referred me to the HEAMATOLOGY CLINIC of the institution . I got to the clinic and i was informed that they run their clinics on Wednesdays but I had to have another PCV done on that Wednesday . So the following Wednesday, I did the test and went to the heama clinic.
Long story short , PCV result came out with 22% ,, I could almost not believe it, I was so elated ehn .
That's how I escaped blood transfusion yet again .
So , that clinic will continue to manage me and it's quite convenient because I work in the hospital.

----------------------

So the outgoing year started on a rough note for me but I survived through it all by the unending grace of the Almighty God.

Here's me wishing you the best of 2022.

Peace ✌️

Good morning All.

The last one month has been hectic so I'll start from the very begining. November came with the good news I had been waiting for after my induction (5 month ago). I was asked to pick up my appointment letter at FEDERAL TEACHING HOSPITAL IDO EKITI, ÈKÌTÌ STATE. Happy would be an understatement of how I felt that afternoon after I got the call, i was giddy with excitement, I was so happy and grateful to God but little did I know the mental and physical stress I was about to face.
I travelled the next day to Èkìtì in order to begin medical fitness tests so I can resume work asap( against my sister's advice who asked me to wait so that she could get me my drugs and other necessary things).
I arrived late in Ekiti , so I started the clearance the next day. We were to do a range of test including Chest X-ray, HIV screening, Hepatitis, FBC, genotype and blood group, urinalysis and fecal microscopy.
You don't get to do all the test in one place so you walk around a lot and that's where the stress started.
Then the results started coming out and I got scared �, there was blood in my urine, sepsis in my blood, PCV at 17% and WBC count at 17×10^9 . The thing is if you're not cleared medically you can't continue with the rest of the clearance not to talk of starting work. The first thing doc did was shake his head and he's said "these results are not good". {Ha, egbami ,i know it wasn't good but oga I don dey find this placement for 5 months o, no do me like this abeg (I said all that in my mind but water don dey comot for my eye small small sha)}. he asked basic questions and then took me to the Consultant of the unit. Thankfully, the Consultant was conversant with SICKLE CELL cases so he asked what my stable PCV was (usually around 19%), what drugs I have been taking, etc. then he placed me on Antibiotics (Augmentin) for 7 days and then retake the FBC test. He was kind enough to clear me medically sha do I was able to complete clearance in 2 weeks.

Second Part coming up soon.
Stay tuned.
Peace ✌️✌️
stay tuned.

Hey guys.
happy Sunday
How was your day ?I'm sorry I often remember this space when I'm in deep shit and by shit I mean in crisis . It's one of those episodes again , the day had been fine so far and then I just get into bed and chest and back just started .I'll be fine though .

I've been trying to get placement for my internship and that has been a handful or bucketfull if I may add , but it is going on well. Expect some good news soon.
I hope I'm fit enough to share the struggles of getting a nursing internship placement soon.

Thank you everyone and good night

REAL STORIES OF PEOPLE LIVING WITH SICKLE CELL

Tristan's story

I was diagnosed with sickle cell disease at 6 months of age in my hometown of Williamsport, Pennsylvania. At that time, I was only the second person in our city to be diagnosed with sickle cell disease. This was back in 1983, when there wasn’t much known about the disease. The doctor who diagnosed me told my mom and grandmother that I wouldn’t live past 20 years old. However, trusting in God, and having praying grandmothers and a family of faith, I am living well with sickle cell at age 37.

Life with sickle cell has had its challenges, especially in my younger years. When I was age 9, I suffered a stroke and spent almost 2 years in the hospital recovering. My entire life changed after I left the hospital. I had to do years of physical therapy as well as occupational therapy, relearning to walk, talk, use the bathroom, and a lot of everyday activities people tend to take for granted. When I returned to school, kids were very mean and cruel to me. Adults were constantly looking at me weird. I felt very uncomfortable in my life at that time. I was depressed and constantly feeling sorry for myself.

Everything changed one day when I decided to try out for a play. I asked my mom if I could do it, and although she was apprehensive about it after seeing how people treated me, she still allowed me to try it. That’s when my life changed for the better. I made the play and was great in it. I noticed that when I was on the stage, people were still looking at me. But instead of looking at me for my disability, they were looking at me for my talent.

I began doing more acting and started modeling school about a year later. I really found my voice and came into my own. Walking the runway helped my balance and posture. Acting helped with my speech and my facial expressions. I was thriving despite what had happened to me. I had more confidence in myself. l felt empowered and positive about my life again. After I graduated from high school, I continued to pursue acting and modeling. I got some real acting work on TV shows as well as becoming a professional model in New York City, doing multiple photoshoots with celebrity photographers. Still to this day, I am doing those things, in addition to having my own fashion line that I created for sickle cell disease awareness, called DiVo Stars.

As an independent fashion designer, I did fashion shows for Harrisburg Fashion Week, Baltimore Fashion Week, and New York Fashion Week, spreading sickle cell awareness through fashion in each of these places. I even created and produced three New York Fashion Week shows in my hometown as fundraisers for sickle cell charities I’ve worked with over the years.

Currently, along with being a professional model, actor, and independent fashion designer, I’m a professional patient advocate for the Sickle Cell Disease Association of America (SCDAA), the Sickle Cell Pennsylvania Sickle Cell Council, and Sick Cells. I am also a peer mentor for the SCDAA, helping youth with sickle cell disease transition from pediatric care to adult care. So while life with sickle cell disease has had its challenges, it has also given me so much strength, compassion, and heart. It has brought things across my path that may never have been there had I not had it. So that’s it. That’s my sickle cell success story.

I’m sharing my story so others can read about people who are living WELL with sickle cell. This year, I have been fortunate to work with the National Organization for Rare Disorders and be the Rare Disease Day Hero of 2021 in the United States, representing sickle cell disease. My story has been shared nationally as well as internationally during the month of February. It’s really been a blessing. I hope that this can make a difference in helping to bring the public health data on sickle cell disease to life and help others who are living with sickle cell disease.

Tips for Others
My advice to kids growing up with sickle cell disease is this: There will be times when this disease will be draining physically, emotionally, and mentally. During those days and times, it will feel like “it’s too much,” and there will be days when you feel like “why me” or feel like you just want to give up. When those times come, just know that you are not alone. All sickle cell warriors go through it, are going through it, and living through it. You are stronger than sickle cell. Just take good care of yourself and never give up. Keep faith that God will never leave you and lean on him when needed. We are sickle cell WARRIORS, which means we were made for this battle. You got this, and your life will get better. You have a purpose, and a destiny like no one else on the planet. There is a whole community of support to help you, listen to you, and that truly cares about you and your life. Keep telling yourself even though you have sickle cell, sickle cell will NEVER have you! Stay strong, and please keep fighting for your life because your best days are still ahead. God Bless.

CDC thanks Tristan for sharing his personal story.

Page last reviewed: June 11, 2021
Content source:  National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
homeSickle Cell Disease Home

[

.

Hey guys,,
I really feel good today.
Someone read this thread and gave me a call. We had a very nice conversation even she cheered me on . And then I come here to meet a very beautiful comment about what I do here and a reminder that this has been on for 2 years.
WOW ��
WOW �
And you still think I should be happy abi?.
Theses small wins mean a whole lot to me and I am so grateful and happy and excited.

Thank you all for reading my crap all the time. It's really amazing.
Thank you.


Peace ✌️

brine:
Hi guys

I'm just wondering if anyone has tried "niclovix anti sickling capsule" ?

Thanks

Hello Brine.
When it comes to my health, i am really careful about what I take.
I've never heard of that medication, all I take is my routine drugs(when I feel like) and a lot of water.
That works.
Nevertheless don't take drugs due to hear say , take only what your doctor recommends.
Sickle cell has a lot of types so we have to be careful.

Be safe.

drehdinho:
This is absolutely interesting. I must comment the originator of this thread for her selflessness , coming out regularly for over two years to educate people living with Sickle Cell Disease.

I always feel sad whenever I find people trapped in this situation, because I know it’s not their fault.

I met a lady recently. She looked so beautiful and full of life, very open and caring even more than my current girlfriend.

When she told me she’s a SCD patient I felt so sad. It’s the love that I have for her that bought me here.

Have been researching about this disease the whole time after this revelation.

I want to assure everyone here reading that you don’t fail until you stop trying.

From the little have researched, there’s a lot of hope for you health wise.

Don’t stop being positive. Eat well. And ensure you keep in touch with folks who only see you as a rare gem.

It is well with your souls.

I get really hyped up when I see a new comment here. I'm super happy that you took time to drop one.
Thank you Sir.

Dear warriors,

Emotionally, I know this battle gets overwhelming at times�. But I'm here to tell you we can't give up! All our past efforts will be wasted if we now give up. What will be the use of all the times we've fought with our last breath and won?

We've always been winning and I'm sure we can do it again and again. Though it's not easy but that's what we're made to do. We're conquerors... We can't give up! It's not allowed at all.

So please, give it your all. When you feel overwhelmed, take a rest and start again but never give up cos it's not over until it is over. Utilize the strengths around you when you are weak. Also, don't forget to be someone's strength when they need it. And lastly, sickle cell got nothing on us cos we're WARRIORS!*

FIGHTING!�

#cpd

PAIN OF A WARRIOR

Everyone they say feel a pain
But some pains turn to gain
How do we explain the bane
Some even say its a feign
We still put on a grin
Coz its a pain of a warrior
But only a few understands

Oh! you who call us lazy
Let me get you busy
Ask Zandy how she felt
When the leg ulcer split
Ask Radeyo, how he endured the maim
Ask my Twinnie the true definition of priapism
We won't forget to remind you of Justezy
A man who died and resurrected for kidney failure
Come to CSS, and have a clearer experience
How pains creep in like a thief at night
And disappear like a volatile gas

We all keep holding our shied and armour
Even if its an horror
No matter the terror
We will get an honour
By keeping our hopes high
Despite all the odds
Coz we definitely know
Its a pain of a warrior
And only the few understands.
©Sheriff

FIVE WAYS TO MANAGE A MILD PAIN CRISIS AT HOME.

TIP 1.
�DRINK LOTS OF WATER!
Hydration is cardinal during a crisis as it helps to unclog the sticky and clogged red blood cells that have blocked and are preventing oxygen and blood flow to the affected area. One should at least drink 8 glasses of water. Remember to avoid cold fluids.

TIP 2.
TAKE THE PAIN MEDS BEFORE IT GETS BAD.
�I know no one wants to rely on pain meds whenever you start to feel signs of a crisis or mild pain but it's better to take a painkiller once you start to feel pain. From my experience,it's better to stay ahead of the pain than waiting for it to progress to a full blown crisis that will require hospitalization.

TIP 3.
STAY WARM.
�It's important to keep every part of the body warm, especially the legs, hands and chest. Always put on warm clothes and blankets even if you don't want to. Staying warm helps the blood vessels not to constrict, allowing easy blood flow.

TIP 4.
DO THINGS TO KEEP YOUR MIND OFF THE PAIN.
It's important to try to keep your mind off the pain because it helps lessen the pain. There are many ways you can distract yourself. You can try reading your favorite books, listening to music has been found to be effective because Music not only helps with the easiness of the pain but it also provides a beautiful distraction and relaxation. Also catching up on your favorite TV shows or movies can help keep you entertained and distracted.

TIP 5.
GET SOME REST.
�I know it's not easy getting some sleep when in pain but try to get some rest whenever you can. Remember with Sickle cell, our bodies works ten times harder than everyone else's so let your body recover and don't feel guilty about it. Don't rush the process and just gain your energy back.

�N. B
These tips are for a mild crisis,sometimes they may help and sometimes the pain may increase to a more intense and severe pain which may require hospitalization to help control and avoid any damage to the affected area.
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Thank you so much Punisha.. I appreciate your concerns..

A good news update is coming soon.. I'm excited..

I'm much better now guys, though still on meds. Thank you so much MariamAlheri and VictorIfe,

The pain started about 30 minutes ago, though I've been feeling unwell since evening.
I'm home �, Dad and Mum in the next room and my little sister beside me.
I have pains in my back, chest, lower limbs and a headache.
I'll be fine . I know that but I need this pain gone befoe I start crying... I'm restless and can only express my pains in groanings.

I won't Wake anyone.. it's my sister's birthday tomorrow so I won't spoil her night with this.
I'll bear this alone.
Again

Good night
Peace✌️✌️✌️

Good evening everyone.
Tonight 8s one if those nights so I really don't know what to say.
Lemme try some diversional therapy.
I developed interest in two things recently
1) learning to write
2) learning a New language.

Writing is one hell of a task I must say.. kudos to every writer out there. It hasn't been easy combining words and making them into phrases,then sentences.
Just so you know, I'm still at the stage where everything i write is trash even to me.
Concerning the language, I chose German for many beneficial reasons.

My induction ceremony is slated to hold next month.. please pray along.

Thanks for reading

Sleep well
Peace ✌️

*Frequently Asked Questions about SICKLE CELL DISEASE.*

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has SCD, the red blood cells (rbcs) become hard and sticky and look like a C-shaped farm tool called a "sickle". The sickle cells die early, which causes a constant shortage of red blood.
*Q* : Why do SCD patient's have pain?
*A*: Sickled red blood cells cannot pass through small blood vessels, they get stuck and clog the blood flow. This results in pain in the areas where blood is not getting to.

*Q* : Why do SCD patients take Folic acid?
*A* : Sickled cells get destroyed easily and Folic acid help make new red blood cells.

*Q* : Why do some SCD patients have big tummy?
*A* : Blood gets trapped in the spleen and the liver whereby expands rapidly. It can presents with weakness, fast breathing, shock and abdominal pain.

*Q*: What should sickle cell patients avoid?
*A* : Strenuous exercise, extremes of weather (cold or hot), cold water, dehydration

*Q* : Why do some sickle cell patients have a give away look?
*A* : This is called 'sickle cell habitus'. They have long thin extremities, prominent forehead or bossing of the head, big tummy, yellowish tinge of the eyes, prominent bone in the upper lip, etc. These features are as a result of rapid breaking down and production of rbcs, repeated blockage to blood flow by sickled cells, reduced oxygen supply.

*Q* : Why do SCD patients have frequent infections?
*A* : Their immunity is low. They have abnormal white blood cells that can't fight infections very well. Also, reduced blood supply and oxygen supply puts them at risk of having frequent infections.

Sickle cell patients do well when they follow instructions ; take a lot of fluids, eat healthy, take fruits and vegetables, take enough rest and do moderate exercise.

They should also have a positive mind set to life and a good support system.


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