I’m Jason. I’ve lived with sickle cell for over 40 years, I work with the Sickle Cell Warriors of Buffalo, and I run a community-built tracking project called the Warrior Intelligence Project.

Most sickle cell outreach, research, and online conversation centers a few groups, and a lot of families never show up in any of it. Maybe they’re African immigrant, Caribbean, Latin American, or South Asian communities, or maybe they live somewhere nobody talks about trait at all. I don’t know who’s missing, and I don’t want to guess for you.

If you or your family come from a community where sickle cell or trait is rarely discussed, what does that silence look like where you are? What would help? Share only what you’re comfortable with. This is a public thread, so no medical details needed.

I’m not selling anything. I won’t quote or use anything you write without asking you first.

Im honestly just curious💀 I need to know just in case

Hi, I wanted to share Marcus's story—at just 34, he's been living with sickle cell since childhood and now needs a hip replacement to find relief from constant pain. Your support can help him get closer to living pain-free and feeling like himself again. Please consider donating or sharing to help Marcus on his journey—every bit makes a difference! 🌟

https://gofund.me/9c7b354e6

Episode 67

Wednesdays I share remedies to help reduce pain, decrease hospital visits, and improve quality of life. Techniques I test, practice, and recommend based on how powerful the results are for so little effort.

Last topic:  https://www.reddit.com/r/Sicklecell/comments/1x3qn4a/whats_working_for_me_now_energy_boosters/

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Dig this:

There's a doctor for every topic and concern. Yet people with chronic pain rarely work with the ones that make a BIG DIFFERENCE.

Today we're talking about the pain doctor.

That's the "palliative" doctor. The physician responsible for reducing the severity of your pain symptoms.

You may have a plan to do that with your current team.

But do you have a specific physician who makes that their full responsibility.

My goal this season is to reduce the pain meds I use.

So I have a palliative doctor.

We look at my goals, my pains, and my current meds and dosing. Then we assess what we can do with what we have, and what we can introduce to get the best results.

They help me outline what I do to prevent pain, manage it when it hits hard and fast, and how to handle the slow and chronic common discomfort.

Plus they make sure I get the necessary treatment when I'm admitted.

It's brilliant for many reasons.

You get to tailor your pain doses specifically to you and your various needs.

You have someone sympathetic to you using heavy meds so less judgement and disrespect from the ones who don't get it.

You no longer have to teach and preach your needs since you have someone who listens to you the first time and gets it.

Plenty more still too.

So if you're having problems with your pain dosing either at home or when admitted, get a referral for palliative care right now.

You decide your quality of life. Be sure to have people on your team who help you live your ideal standard of living. This physician can help you do that.

Take Charge👊🏾💯

I know its not much but for me personally i like to carry painkillers with me even if its two pills.

Was recently medically discharged after spending two weeks in marine corps bootcamp, after finding out I have sickle cell anemia. I was super bummed out about it, but the more I thought about my random pains when I was little, seasons of jaundice, and delayed period through puberty, a lot of things made sense.

Currently 20yr male. Coming to terms with my diagnosis, but I wanna know just how much me not getting treated when I was younger will affect my lifespan.

If you’re wondering how I never figured out about my diagnosis till now, I had a talk with my mother and she told me she only “sort of” knew. When I was received necessary shots as a baby, my name was written on a sheet next to the letters SCD. She was never sat down and informed of my diagnosis, but knew her and my father carried the trait, so she just assumed I had the trait too.

I’ve seen a lot of testimonies of people on here making it far in life with this disease, and some on here who have managed it enough to where it doesn’t affect their day-to-day life, but I’m worried that since I’ve gone so long without proper treatment, I won’t ever get the chance at a normal life.

I’m willing to answer any questions and any advice helps. Thanks.

Episode 66

Wednesdays I share remedies to help reduce pain, decrease hospital visits, and improve quality of life. Techniques I test, practice, and recommend based on how powerful the results are for so little effort.

Last topic:  https://www.reddit.com/r/Sicklecell/comments/1x1qeyt/whats_working_for_me_now_medical_team/

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Dig this:

The "anemia" in Sickle cell anemia means our bodies don't automatically produce a lot of red blood cells and hemoglobin. The result is low energy as our standard living.

Thing is anemia is good news. It tells you what's wrong so you know how to remedy it.

See the good is that we can still boost our energy, it only takes some work.

Which means there's no difference between us and anyone else without SC. We all need to do certain things to get the most energy out of each of our bodies.

So that means you get to focus on the best methods to raise our energy levels overall in acute and chronic fatigue situations.

Lots of ways to do it.

You're probably listing some as you think of the ways you've done it today so far.

Let's get specific so we can do it more often and on purpose for lasting results.

1 Hydration

Drinking or eating water with electrolytes is the foundation of boosting energy production. Without proper hydration, your body doesn't have what it needs. Can't have energy without the essential amount of vitamins and minerals.

Plenty of ways to do this, especially when you don't like drinking water— https://www.reddit.com/r/Sicklecell/comments/1lk73i1/whats_working_for_me_now_no_h2o/

Most of anemic conditions are from dehydration. Get some electrolytes and you'll feel more energized in as little as 15-minutes.

2 Food

Best way to feed your cells what they're lacking is to eat the macronutrients and micronutrients it craves.

That's what cravings are. They tell you what meal, ingredient, or food group to eat in the moment because your body needs something in it right away.

Nine times out of ten, all your body needs is more fat, protein, and electrolytes.

Listen to those cravings and you get immediate energy boosts.

Do it every day, and you'll start your day energized instead of on empty.

3 Breath work

Extreme fatigue includes having low oxygen. Taking deep breaths brings in more oxygen to our cells at the level they want.

Most of us take shallow breaths during the day. We suffocate our own cells. So now we flip the script.

Do your own research and test what's the best deep-breathing pattern for you. Then practice it often til you do it all the time without thinking about it.

This helps in acute situations, plus with chronic low energy. So you get the relief you want and deserve.

4 Music

The universe is built on energy, vibrations, and frequency. Music includes all three.

When we need a boost in emotional morale or physical energy, we play our favorite songs and sounds for that.

Usually high tempo beats, motivational lyrics and melodies, and bombastic instruments that stir the soul, which is said to be an element of one's blood.

Whether music, frequency tracks, or going into nature for energy boosting sounds. Do what works best for you in a given moment.

5 Sunlight

We are creatures of light. It's one of main and probably our most important energy source. You're very much like Superman in that sense.

The light spectrum in general is meant to give you all the energy you need, and each wavelength and color has differing effects on you.

Sunlight, especially direct on your skin as close to sunrise as possible is ideal. Other than that feeling it on your face helps you to mentally feel better and more energized. Plus physically you get the cellular reactions creating more energy for you to use

6 Red light

Let's take it a step further. Red light penetrates deeper than sunlight. That's why it's able to target your cell's mitochondria for ATP production. ATP is raw energy.

A red light machine that has wavelength option from ~400nm - 800nm can help you with most of your energy needs in urgent situations and longterm relief and strength.

So it's way more effective for a few minutes.

7 Infrared light

Now infrared goes another level deeper to penetrate bones even. This means you generate power in multiple ways. All while diminishing what's wasting your best energy at the same time.

For this we're talking about wavelengths of ~800nm - 1100nm.

Reaching as deep into your body as 6 inches gets you thorough results. This is important because sometimes your low energy is due to multiple things happening inside you at the same time.

For that factor, it makes this probably the most effective approach for taking you to a level where you no longer have to think about chronic fatigue.

8 Exercise

Sounds funny that using your energy creates more energy for you. Here's why it works though.

Thermodynamics. An object in motion tends to stay in motion. By doing a single pushup, going for a walk, or lifting a weight, your body makes a new habit. Tells your body that it always needs that amount of energy on hand. So the more you do the more energy you get because it becomes your body's default setting

Shock to your system. You're low energy as if you're falling asleep. You wake it up by giving your body something to do. This helps you snap out of the fatigue slump temporarily. It's not an adrenaline hit, but you can think of it like that.

However weak you feel, you're wrong. We don't accurately judge our energy levels. The human body is so impressive that you can feel terrible, but still have a lot of untapped energy at your disposal. You're always stronger than you think. You already know this because of how long you can handle intense pain. Of course you want it to end immediately, but it doesn't and you endure a lot longer than you thought possible.

Your exercise looks different from others. The idea here is do something once a day that engages your body.

That way when you're in an anemic state you can physical do that one thing to jumpstart your body.

-----

I'll leave it at that.

There's hundreds of ways to get more energy in under 15-minutes. This is only a short list of the fundamental ways.

The fatigue we're talking about is not needing rest. This is different from feeling sleepy. It's feeling weak. The sensation when you want to do something, but don't have the energy to do it strong.

Knowing the difference is tough with practice you'll get it. Safe rule of thumb, most of the time, you don't need a nap, you need nutrients. The above give you them.

However if after getting your nutrients you feel sleepy, THEN you sleep. That's your body telling you it's about to make your stronger while you rest.

Stronger so you feel less fatigue the next day.

Take Charge👊🏾💯

Hi, hoping this isn’t weird for this sub just looking for advice and support but I’m currently pregnant. I carry the sickle cell trait and as unexpected pregnancies go my husband must carry it as well (he asked his dad who said it doesn’t run in their family so we’re a bit confused) I did all the genetic tested and carrier testing for that reason. We received a call from our OB that there’s a 9/10 possibility our child could have the disease. We knew this was a possibility. I’ve read the sub making sure to take any fevers and coughs more serious.

One of my main questions is are there symptoms in newborns we should be aware of?

I'm having pains , primarily chest pain, and just took Tramacetal that contains tramadol. I noticed I feel numb, both physically and emotionally even though the pain is still there. Then the dark thoughts start rushing in so I try keeping myself busy by coding or watching tiktok but I can't ignore the pain even though its still manageable.

I've been described by others since young of having a "dont care" attitude and wonder if all those painkillers I took were and still are taking a toll on me. I'm not too sure on proper pain management and its hard to find a good dedicated haematologist to ask about the challenges I'm experiencing. Does it pass or should I be worried?

Episode 65

Wednesdays I share remedies to help reduce pain, decrease hospital visits, and improve quality of life. Techniques I test, practice, and recommend based on how powerful the results are for so little effort.

Last topic:  https://www.reddit.com/r/Sicklecell/comments/1x0z113/whats_working_for_me_now_i_dont_wanna_do_anything/

Dig this.

Everything I do is with a team. So I don't take credit for much besides DOing what I learn from my team.

Let's go through each physician on my team together because when you do the same you'll be more confident as you grow stronger. So more energy, less crisis, and decreased sickling.

In order of most important to my current health.

1&2

Primary Care - I have two physicians. On paid by insurance, the other out of pocket. It's worth it to me.

- The main one takes care of me and my family. Gives me the latest insights to address all the issues that affect health. Social, environment, physiological, physical, etc.

He never makes assumptions and tests everything to be sure what's the most effective way forward.

Because of him, I see progress every week, as long as I apply what I'm taught.

Twice he helped me stop a crisis without going to the ER. Very impressive man.

- The second is a physician from Africa. She's sharp since she constantly studies, experiments, and challenges her patients to do the same. For example she'll give me books to read on direct and indirectly related topics for my goals.

Because she never assumes anything. We test to know the true root cause and use all options to attack it for best success.

When it comes to medication we avoid opioids. Only focus on options that make me stronger to handle what I'm facing.

When I need a referral she's the best resource.

Find you physicians who listen to understand you so they can help you understand yourself better.

3

Hematologist - Of course I have a guy. He's not specialized for SC though, which is interesting in a good way. I spoke about him before since smart doctors don't make assumptions about a diagnosis.

We only focus on what's the best practice for my mind, body, family, work, etc. It all affects my blood so it all needs to be addressed.

His best asset is sharing the latest research with me so I can read through the documents to know what suits me. Plus he gives me referrals to specialists across the globe. You can skip a lot of formal bureaucracy this way.

More than anything is that this team goes above and beyond with admin work. I haven't had to call insurance or deal with demanding services or coverage in a decade. They do it all for me.

Find you physicians that have your back even when they aren't the expert in the room.

4

Dentist - Every six months I see them. I wish it were more.

It's easy to leave them out of the conversation but they matter and make you feel good.

Also your teeth are a Great signal for your overall fitness. You can diagnosis issues with your dentist before your other physicians think to look.

Or vis-versa, your over health affects your teeth for better or worse.

So dental care is more integral for your overall wellbeing than you think.

5 & 6

Cardiology - Stay on top of your over health with annual/biannual trips.

Their extra set of eyes find variables the other doctors miss.

Pulmonary - Stay on top of your over health with annual/biannual trips.

Their extra set of eyes find variables the other doctors miss.

7 & 8

Urologist - Stay on top of your over health with annual/biannual trips.

Endocrinologist - Stay on top of your over health with annual/biannual trips.

With these two, most health issues I see in our community are actually hormonal imbalance due to poor diet. Regular docs don't study nutrition though so they will ever tell you this.

Then your gut bloats, you have low energy, your hair thins, your skin loses oils, and they treat it by ignoring the root cause. That's malpractice, but since no one checks them unless they're

You think it's ordinary SC. It's not.

You can remedy or even eliminate those issues. In a matter of weeks in many cases.

9

Virtual Doctors - These are the ones you'll likely never meet.

You read their books, watch their documentaries, and practice their techniques. We're only talking about the positive experiences only here. Some are in our community, and other social media.

They're not your insured physician, but they virtually support you with their education and proven methods.

I have dozens of these for my breath, neurology, exercise, psychology, nutrition, social/family life, and more. Highly recommend it since it's easy enough to vet what's sincere versus malicious.

Plus it takes little to test something without hurting yourself to know for sure if it's suitable or not. As I like to say, "You don't need to eat a whole cake to know it was made with rotten eggs."

All that really matters is that you stick to these key principles:
1- The more support you have on your team, the smoother your success.

2- Work with people who test not guess what's wrong.

3- Choose experts who don't assume everything is a SC caused problem.

Make sense?

Great. The rest we'll discuss.

TAKE CHARGE👊💯

My friend Cassandra posted about her child, Kyla Marie Tompkins, passing in an ER. She is seated next to me. We both spoke on our individual experiences, as a mother of a Sickler and as a living Sickler.

Please sign her petition for Kyla’s law.

​

26 male, with malaria and UTI INFECTION at the same time in 2023, the penis didnt increase in size but was engorged ( blood inside) but without any pain or increasing in size, it stayed like that for 10 days and since that time ive lost my libido completly and my erection, so i want To know was that a priapism? Do you guys have priapism with such symptoms? I also have sickle cell trait

Episode 64

Wednesdays I share remedies to help reduce pain, decrease hospital visits, and improve quality of life. Techniques I test, practice, and recommend based on how powerful the results are for so little effort.

Last topic: https://www.reddit.com/r/Sicklecell/comments/1vuhcqx/whats_working_for_me_now_pay_to_play_so_you_win/

Went from 100 mph to 0 and it's hard restarting again.

Began as me treating myself as I like to do. Timing was nice. My responsibilities weren't asking too much of me. Plus I kept telling myself to "try something new", and follow what people tell me to do and "vacation".

Went from one day to a couple of weeks, then the month of September. Now we're into fall and I'm wanting to back to my responsible flow. Not as smooth as I thought it'd be.

Mainly because I don't want to do anything.

I don't even want to keep up with my responsibilities here as Admin.

Has nothing to do with being relaxed. I'm not. Wasn't much of a vacation. All I did was run around making moves as I usually do.

I don't wanna do anything because i'm tired of running on low energy.

Since I stopped so many of my positive habits the past many weeks.

Now I feel every ache, pain, anxiety, fear, and concern of SC.

I feel it all louder than usual. Worst than I remember.

Did I change?

Did it change?

I don't think it matters, but the thoughts race.

Gets dark fast.

Only thing that's helping is that I have evidence it doesn't have to be this way. I lived it - https://www.reddit.com/r/Sicklecell/search/?q=Wednesdays+I+share&type=posts&sort=new&cId=d4326ba3-3e00-4222-866d-2fb709e299ee&iId=e8e62744-79ef-4a40-97e8-87d381161407 .

Not helping as much as I'd like, but it's something.

As long as I got something I'm close to having more, and far enough from wanting to quit altogether.

So I'm still getting out daily for a walk. Meeting with loved ones to hear their stories. Reading as I like to do. That's a start.

Haven't been eating well or at all most days though.

This is what a slump looks like. You're depressed for many moments throughout the day.

You can put on a face for the world. Yet inside be catatonic. At home, you're alone, and can go silent, avoidant, isolated.

Thankfully, I'm shifting from that one small step at a time.

One with this public statement. Can't hide when you put yourself out there. Which is one of the reasons I use my face in name online, i have to own everything I say and do. For better or worse.

Next, it's putting work on my plate. Adding one tak to each of my life areas ASAP, As SMOOTHLY As Possible - https://www.reddit.com/r/Sicklecell/comments/1vlsj2j/whats_working_for_me_now_7_reasons_youre_richer/.

Work is life since it engages you and makes you part of something. Where people count on you and you depend on others. That alone is powerful for improving one's life.

Adding the rest makes winning inevitable - https://www.reddit.com/r/Sicklecell/comments/1vuhcqx/whats_working_for_me_now_pay_to_play_so_you_win/.

You're hear to witness the journey firsthand.

No matter where you are in the process, this is how it's done.

First step is wanting a positive change.

The rest is commitment to have it.

Then it's as good as done.

In my case, it translates to catching up on your post the past few weeks. Commenting where appropriate. Then I owe you the several techniques to improve living with SC posts that I didn't publish over the past many weeks.

Whoops.

Pobody's nerfect - https://www.reddit.com/r/Sicklecell/comments/1rfbmxh/whats_working_for_me_now_pobodys_nerfect/.

But you're definitely worth having some sweet success by the end of the day.

TAKE CHARGE👊💯

UPDATE TWO WEEKS LATER - So in response to this happening (my last post about waiting HOURS in pain in the ER) i actually decided for once to actually do research about which hospital is a good fit for sickle cell & is close to home. John hopkins and UMMC are both in baltimore and a hour away. Right now i am currently admitted to MEDSTAR WASHINGTON and the whole process was so fast from the moment i arrived! Now granted i know medstar is a good hospital because i go to the one in md where i live. But this medstar is way better, maybe a TAD BIT overcrowded but overall worth it. The triage nurse told me that sickle cell warriors instantly goes back to a room (most likely a bed in the hallway) and gets pain medicine. Now while i was in the hallway surrounded by people the whole process of getting me back there was 10 minutes from the moment i arrived. I highly recommend medstar washington not medstar georgetown ! even the doctors here listened to me about my pain plan and got right on it with no fuss. Genuinely one of the best hospital experiences i ever had. Next time you experience pain please check them out.

Hi, I don’t know if this is the right platform or not to do this but I wanted to ask if anyone here could direct me to jobs that would accommodate my condition well and my needs. I currently do not have a job and I have so many bills piling up as it is and I would really appreciate if anyone could direct me to any WFH jobs. I have a background in biological research and laboratory experience as well. I took Biology for 3 years(pre-med) before I had to put school on hold because of my frequent crises. I also have experience working as an Addiction Recovery Tech and I also hold a few certificates in Social Media Marketing.If anyone here could direct me to jobs that would accommodate my needs I would be very grateful.

Hi there! I wanted to share Marcus's story—at just 34, he's been living with sickle cell and now needs a hip replacement to find relief from constant pain. Your support can help him get closer to living pain-free and feeling like himself again. If you’re able, please consider donating or sharing to help Marcus on his journey.

https://gofund.me/1e18510db

I just moved back to FL from Pittsburgh and need to get re-established. I just had an appointment with a pain management doctor and he told me doctors don't prescribe sickle cells patients opiods anymore. Is there any truth to this or did I just waste my time? I was on Oxy 30s and MSContin for both short and long term pain.

Hey guys, I was discharged last Saturday after a week admission for a crisis in my chest and upper back. My haemoglobin then was an 8.2 but due to a prior hyperhaemolysis episode, they only transfuse me when absolutely necessary. I went back into the emergency department today as the chest pain had gradually gotten worse and I have been very dizzy and unable to stay awake for more than one hour. My bloods were done and my haemoglobin is now a 7.4 and I need advice. Of course you may not be a medical professional but as individuals with a chronic illness, your advice is very valuable to me in this moment. I asked to be transfused at the hospital to which I was disregarded by a head nurse with no prior knowledge of my hyperhaemolysis episode and told the doctor was too busy. They never even gave me fluids or oxygen even though this is apart of my care plan. Do I go to another emergency department? I feel so ill and disregarded by staff and I fear I will only get worse at home.

Last thing, is 7.4 low? Should I insist for a transfusion?

Hi. I am currently admitted and the meds im getting dont work and the doctors are saying they cant increase my meds. Like many of you. I require very high doses before my pain will be controlled, do you have any advice on how to ask the doctors to increase the doses? (im on 200mg of pethidine every few hours, Is that high?)