r/Sicklecell • • 4h ago

Help Properly supporting my son

2 Upvotes

Hello Sickle Cell Warriors and their supporters. I'm reaching out for any resources, information and advice possible. Long story short, my son is 6 months old with Sickle Cell Disease. I was told I didn't have trait all my life and went into conceiving thinking I didn't have it. Prior to, my testing when I was a baby said I didn't. Baby's paternal grandmother had it so it was a huge deal that I didn't. Unfortunately, they were wrong.

I have reached out to my local resources here in Southwest Georgia and unfortunately we are disjointed. I try to keep myself informed as well as prepared for the inevitable crisis he will have. I say that because I am a crybaby but I want to be strong for him. Somedays, I have anxiety that anything I do will be the cause of a crisis for him and I worry just so much. He is on daily penicillin and we give him water as his doctor recommended. He is very smiley and happy with a good temperament. He just makes me so damn happy and proud to be his mama.

My question is just a wide net cast of trying to gain any resources and advice. I love him so much and want to do all I can to help my baby. I'll probably unfortunately but fortunately reach out to another area's parental support group. Please share anything you can - support, links, words of encouragement. It would really help. Thanks.


r/Sicklecell • • 10h ago

Help please

6 Upvotes

Please someone reach out…

I so tired of suffering. I’ve cried, screamed, prayed; I’ve even been so close to attempting. I don’t want to be strong nor push through. I just want to be pain free, heard and or at the very least believed. Seen as a person; not as a label or a number.

I know it’s been awhile since I’ve been here, so I know I don’t deserve any of your help. But please share with me your reason why other than surviving sickle cell. There has to be more than just surviving. Thank you


r/Sicklecell • • 5h ago

Update

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2 Upvotes

After speaking to my landlord he has decided to let me pay this off if I’m able to pay a lump sum of 1000 then the rest spread across as $500 every two weeks. The donations yielded $300 so I’m $700 away from my goal and I’m here to humbly ask you guys to donate if you can, share and upvote thank you so much


r/Sicklecell • • 2h ago

Education/Information Drinking urine?

0 Upvotes

OK it's a tough topic, but one I want to understand.

All my life people have talking about drinking their urine when they're unwell.

Across the board it seems all cultures practice this.

Historically, it's been seen to help large populations.

Today it's used as a performance enhancer.

Yet for obvious reasons in the modern world, 95% of us don't and won't use it.

Regardless of the insights.

I want to know your experience.

At the end of the day I'm willing to do most anything to get the positive results I want.

If you tell me handstands will help me, I gotta do it.

So this is on my mind:

Would you try this?

Is urine/urea part of your regimen?

If yes, what's your process, and how does it help you?


r/Sicklecell • • 19h ago

I seriously need to talk to someone rn, if anyone cares, someone who would actually listen and not try to belittle what im saying, cause i have a feeling some of you know how that feels

15 Upvotes

r/Sicklecell • • 21h ago

Education/Information What's working for me now— Growing pains

9 Upvotes

Episode 70

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/1x6b8um/whats_working_for_me_now_fall_for_deep_tissue/

--------

Dig this:

No one talks about an important issue we face with SC. So let's do it now.

When you start to improve your health with SC, things get worse before they get better.

This is normal and necessary.

It's also why most people avoid the process because they think it's a bad thing.

Thankfully it's not.

Happens with all health journeys.

A lifetime of certain habits makes SC strong. Now you get to learn new habits that limit the illness.

Fixing things reveals new issues though. New soreness, hurt, and pains.

I like to think of them as growing pains.

Picture this.

You're renovating a house. You think you're only going to add new hardwood floors. Then you take out the old flooring and find molding from leaking, lead pipes.

Of course you can ignore the root issues, but it's best to address them before installing new flooring.

Same for you.

You change your diet to lower your anemia and sickling. So now your body gets to heal. As it heals it addresses key areas you didn't know need work. Think your organs, skin, digestive system, etc. Even your nervous systems, which may cause psychological challenges.

Thing is healing hurts because you detox first.

The result is to remove all the terrible byproducts of your old life. All the accumulated chemicals keeping you unwell.

Doing that leads to new symptoms.

Such as nausea, vomit, diarrhea, edema, failed appetite, insomnia, aches and pains, lethargy, impotence, weight loss, colds, flu, fever, immobility, and more.

This is why thorough testing is important to the medical process.

Some symptoms are Great signs, and not bad at all.

They may not feel that way, but it's important to keep going.

So that's my warning to you so you aren't afraid to get stronger and possibly put an end to your hospital visits.

It's also my encouragement to you that this is a process. Takes time and most important commitment.

You can't skip steps either. First step is detox, which leads to some pain and symptoms worse than you start.

Over time it subsides though.

Definitely worth it to defy what everyone told you was impossible.

The key is to test to know if they're healing pains or something else.

Take Charge👊🏾💯


r/Sicklecell • • 1d ago

Help Please

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5 Upvotes

r/Sicklecell • • 1d ago

Support Sickle cell hip replacement surgery

4 Upvotes

Hi everyone — I’m reaching out 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 and regain his normal life. If you’re able, please consider donating or sharing to help him get closer to the support he needs — every bit makes a difference.

https://gofund.me/9aa0d81a9


r/Sicklecell • • 1d ago

Is it normal to be prescribed Narcan?

7 Upvotes

I asked my doctor for butrans in pill form (which I’ve had the film in the past) to which she said since she wasn’t sure if there was a pill form (there is) and then she prescribed me narcan?? And my mom picked up my meds for me when I meant to leave the narcan so now it’s on my chart and I don’t want the stigma. I’ve been taking the exact same pain pill dosage (oxycodone) and quantity (56) and even refill date for like 15 years. I’ve tried other meds but this has been a constant. I had narcan once before, shortly after I came to this new doctor. I just don’t understand why is be prescribed narcan after all this time, when nothing has changed about my interaction with the medicine. Am I being irrational?


r/Sicklecell • • 1d ago

Education/Information Can you handle union work / construction with sickle cell disease

7 Upvotes

Does anyone have a hard labor job and if so what’s your experience and how do you manage. I can get inside the union and work construction but I’m unsure not knowing how my body will handle it I’m still young and in my prime but hours of hard labor and weather conditions might not mix well


r/Sicklecell • • 1d ago

I applied for ssdi but don't have a chance?

6 Upvotes

I barely get sick I have bera thalessmia minor..I'm 52 and I lost my hearing in my left ear completely and wear hearing aids.

The thing is I can probably do jobs that don't require much physical activity like gas station clerk or security guard.

Am I wasting time applying? I got my records from the hospital and it's 1700 pages and I'm going to send them to ssdi.

Is this worth it? I was told not.to.work while applying because it messes up the cause.


r/Sicklecell • • 1d ago

Support Group in DFW

3 Upvotes

Hello everyone! My name is Alexander, I’m 28 years old, and I live in the Dallas area. I have sickle cell disease and I know the challenges that come with living with it. I’ve been thinking about starting a support group here in the DFW area where fellow sickle cell warriors can meet in person, connect, share our experiences and support one another. I want to create a space where we can come together regularly, build friendships, encourage each other and have people around us who truly understand what living with sickle cell is like.

If this sounds like something you’d be interested in, please comment below or send me a message. I’d love to connect with other warriors in the area and hopefully build something meaningful together!

Thank you!


r/Sicklecell • • 2d ago

What does a Sickler look like?

47 Upvotes

All my life my fellow Sickle Warriors have told me I don't, "Look like i have Sickle Cell." Can someone please tell me what a Sickler looks like?


r/Sicklecell • • 2d ago

Support Help me get sickle cell hip replacement surgery

13 Upvotes

Hi, my name is Marcus Goodwin. I’m 34. I had sickle cell when I was eight years old. I need a hip replacement, and I’m just asking for help.Anything will help, just please. I’m tired of going through this pain. I’m tired of having to live too by taking pain medication every day. I just wanna be normal again. Like I said, all donations are accepted. Don’t go beyond your means . Thank you. Have a blessed day. https://gofund.me/50d39e7a3


r/Sicklecell • • 2d ago

Is it okay to play football with the SC type football UK

8 Upvotes

I am currently U16. I used to play for a team when I was U7 but stopped as I was advised to by the doctors. I eventually started playing again in the U14 season and currently. I play in quite intense leagues such as the EJA and Bedfordshire Youth Saturday League div 1. I keep myself in pristine condition physically but I tend to get seriously out of breath every few matches. Just wanted to know if there is some sort of solution to this problem


r/Sicklecell • • 3d ago

Support let it all out ig

6 Upvotes

!!HEAVY TOPICS AHEAD!!

Okay, so I came here a while ago talking about my parents, my father, and the addiction situation. Now I’m just here to let it out, I guess.

I grew up mostly ignoring my SC. I’d take my meds when I remembered, and play to my limit, which usually meant no play—just sitting, reading, or talking, maybe chasing friends for a bit. This was during my primary school years, up to age 12. Looking back, I realize I’ve always had memory and attention issues, and I’m starting to think I might be either ADHD or autistic. When it came to my illness, I never paid attention unless I was in pain. I sometimes chose not to research it, even though my stepmom encouraged me, because learning about SC never painted a happy picture. Those primary school days hold my first memories of feeling worthless and wanting not to exist, or just going through depression. My earliest memory was sitting in class when the teacher explained self-esteem and asked if we had it—I didn’t raise my hand at first, only doing so to avoid being called on. Another time, my stepmom gave me a letter to deliver to my teacher. Memory is tricky, so I’m not sure if she told me it was about me wetting the bed, or if I just thought that’s what it was about. I didn’t want to give it to the teacher, and later I think I threw it away. I remember crying at school that day because I was a bed-wetter, and every time it happened afterward, I felt deep shame. It didn’t take long for me to learn what suicide was; I often thought about it and even tried once or twice. One memory I keep revisiting is hiding a bottle of weedkiller behind the fridge at home because I wanted to die but didn’t want to leave. I kept it there for a day, thinking that if I ever decided to, I could just end it.I don’t remember my exact age during that story, but I was young. The point is, I’ve been struggling with depression for a while, and at this stage, if I were diagnosed as chronically depressed, it wouldn’t surprise me.

I remember throughout my life being under pressure to achieve, with my family always expecting high grades. I recall my father waking me up in high school and threatening to pull me from school if my grades kept slipping. Back in primary school, I was often called “the scientist,” and occasionally someone would say I’d bring prosperity in some way—real golden child treatment. My father once used this against me during a car ride, reminding me that people used to think I was a prodigy. After that day, I never referred to myself as smart again, and sometimes I’d even correct people when they said I was.

I think I developed moya moya in grade 10. I found out I’d had a stroke, and not fully grasping the seriousness, I thought that was it for me, my life was over. I became really depressed and basically stayed in my room for I think about three days before my dad came in and said something like, “You can’t stay like this.” He got me to start coming to his garage. Honestly, people are overrated.

I remember going to the garage without knowing why I was there, feeling disconnected from myself. One day, my father was chatting with one of his coworkers and said, "<coworker name>, I found someone lazier than you." I can’t recall if he pointed at me, gestured, or how I even came to know this—whether I overheard it or someone told me later. I just remember thinking, "But I just had a stroke, what do you expect from me?" I’ve noticed that people care, or pretend to care, only up to a point, and then it’s like you stop mattering—they only care about what you can provide. Either way, that moment marked the start of the latest chapter of my life.

When I started working at the shop, it was basically bullying every day. They’d tease me about being lazy, and I’d go home with a pounding headache. My dad would drag me back, and I’d be confused about what had changed between him being a caring parent who understood his kid just had a stroke, and now essentially an employer trying to squeeze me dry. Over time, I learned to play the game—if someone asked me to do something, I’d do it. I still got teased, but less, and sometimes I’d cuss, which led to reprimands (at my father’s company). At that point, I didn’t hate my people; I didn’t even see any of this as unnatural because I used to think Black parenting was harsh (it took me a while to stop thinking like that). But playing the game came at a cost—every day I’d be in pain from working, so every day I’d take pain meds. Enter the era of bullshit.

All of the above is a simplified version, but here’s what’s new: my dad has developed a dislike for my use of painkillers, viewing it as an addiction. I disagree and think labeling it that way without evidence is dangerous, and now I’m dealing with the fallout. About three months ago, I woke up in pain. My stepmom and brother were ready to take me to the ER, but my father told them not to, which led to three hours of sickle cell crisis. Instead, my stepmom drove me around in the car rather than taking me to the hospital. They only took me there in the morning, maybe realizing they couldn’t leave me home alone like that. My stepmom said my dad once told her he wanted to see what would happen if they left me to handle it without meds, so maybe this stems from that. The whole situation left one of my arms completely useless for two weeks and made me deeply distrustful and resentful toward them. I keep things civil but have distanced myself even more than usual. Since my dad doesn’t want me taking pain meds, I just don’t go to work, which I feel has them acting differently. Earlier this week, I needed hydroxyurea, which costs money. I asked my father for it, but he went into a monologue and questioned me. I still bought the pain meds, but the whole situation weighs heavily on me, and I don’t like having to sneak around and lie to get them. My doctors at the sickle cell clinic suggest finding another job to work toward independence, but that’s not easy. I looked into call center jobs, but they’re too far away, and other places either haven’t called back or have turned me down. The good thing is my YouTube channel is growing and healthy, with one person funding me and a friend deciding to help, but I still can’t relax. I’m just so tired of feeling scared and hate that almost every thought is about anxiety over my situation.

I really would like some advice, but honestly, just feeling heard would be a blessing right now. If you could just say something, I’d be thankful. Sometimes I feel like crying, but I think I’ve forgotten how to.


r/Sicklecell • • 3d ago

Education/Information [Anonymous Survey]

5 Upvotes

Hello everyone!

First, we want to acknowledge the strength and resilience of those living with sickle cell disease and the family members and caregivers who support them. We understand that everyone's journey is different, and we truly appreciate the opportunity to learn from your experiences.

We are graduate students conducting a survey, link here, as part of our biopharmaceuticals course to better understand the experiences, concerns, and treatment preferences of individuals living with sickle cell disease and their caregivers, particularly regarding gene therapy.

Your experiences and perspectives are incredibly valuable to us, and we hope to better understand what matters most to the sickle cell community. Participation is completely voluntary, and all responses will be used solely for academic purposes.

Thank you for considering sharing your story and perspective with us. We sincerely appreciate your time and willingness to help us learn from your experiences!

Survey https://docs.google.com/forms/d/e/1FAIpQLSckqtKWjcD3LFTYEfK9Y8LrjGwaEVgDN3ckspt0HLCK91OKJQ/viewform?usp=header


r/Sicklecell • • 4d ago

Keller postman/Archer

6 Upvotes

Is anyone still waiting for Medicaid to release liens,I been waiting for a couple of months for Medicaid to finalize deputes…


r/Sicklecell • • 4d ago

Support Help with sickle cell hip replacement

21 Upvotes

Hi, my name is Marcus Goodwin. I’m 34. I had sickle cell when I was eight years old. I need a hip replacement, and I’m just asking for help.Anything will help, just please. I’m tired of going through this pain. I’m tired of having to live too by taking pain medication every day. I just wanna be normal again. Like I said, all donations are accepted. Don’t go beyond your means . Thank you. Have a blessed day. https://gofund.me/f277876ff


r/Sicklecell • • 4d ago

Question Screenwriter looking to connect: Help me accurately portray a young girl living with Sickle Cell Disease.

7 Upvotes

Hi everyone,

I am a writer teaming up with an independent filmmaker to develop a script for a short film centering on a young girl living with Sickle Cell Disease (SCD).

Our main goal is to shed light on how this condition truly impacts individuals and families, raising awareness and fostering better public understanding. Because we want to avoid clichés and ensure the portrayal is deeply authentic, I want to learn directly from the community.

If you are a patient, parent, or caregiver willing to share your firsthand experiences—whether it’s about daily life, pain crises, navigating healthcare, or the emotional toll—I would be incredibly grateful to listen. Please feel free to comment below or send me a DM. Thank you so much for your time and openness!


r/Sicklecell • • 4d ago

I can't focus

10 Upvotes

Hey everyone, I wanted to ask if any of this has happened to any of you. In March 2023 I had kidney and liver failure. It was a terrible time in my life. I was unconscious for about 4 days. Since then, I started grad school in 2024. I noticed it took me much longer than before to complete anything. Now in 2026 I had assignments to do and I can't focus at all. It's getting frustrating and wanted to know if this happened to anyone.


r/Sicklecell • • 5d ago

Thank You

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13 Upvotes

I just want to say a huge thank you to everyone who saw my post yesterday and helped me out. ❤️ BFF
I was able to receive around 10% of my goal in just one day, and honestly, I’m incredibly grateful. Yesterday, I was struggling to figure out where I could even get $200, so seeing people come together to help me means more than I can put into words. Every little bit has made a difference, and I genuinely appreciate everyone who took the time to donate, share, or offer words of encouragement.
My GoFundMe link is still up, so if anyone else would like to help, I would be extremely grateful. Thank you all for giving me a little hope during a really difficult time. 🙏❤️

https://gofund.me/dc5645a4c


r/Sicklecell • • 5d ago

Sickle cell disease hip replacement https://gofund.me/546aba21a

30 Upvotes

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/04b027aa8


r/Sicklecell • • 5d ago

Education/Information What's working for me now— Fall for deep tissue repair

6 Upvotes

Episode 69

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/1x5w5uc/whats_working_for_me_now_talk_with_medical_cure/

--------

Dig this:

Each season is a 12-week cycle that matches our bodies rhythm to heal and strengthen itself.

Each weather cycle benefits our fitness. Working with those cycles keeps us out of the hospital and in better control of our health.

Not to mention they prepare us for the next season.

For those in the northern hemisphere that means winter's on the way.

So let's make winter easier by getting the most out of this fall.

Fall (or autumn) is for reflection and preparation. We get to recover from the summer, as we prepare for the slower and colder months where stiff muscles joints are likely.

Everything you do regularly that keeps you out of the hospital and with reduced pain stays the same. During the fall we add a focus on key areas to level up our fitness.

Think along these categories:

Deep tissue repair & collagen

This season is about improving blood circulation. Expanding your blood vessels so when they shrink in the winter they don't shrink that much. That's key to staying warm in the cold.

We also add collagen. Ideally you eat it. Supplementation is a Great second option.

Consider arm and leg exercises that suit your level of activity. I shared the lazy approach here: https://www.reddit.com/r/Sicklecell/comments/1u5yahm/whats_working_for_me_now_easy_exercise/

As you see, you can get plenty of exercise by simply standing still, if you're in the right pose.

Learn to take deep breaths. This is key to life, and living pain-free. In the fall, it's how you increase bloodflow and oxygenation down to the deep tissue preventing stiffness.

When you feel cold, this is a primary reason for it.

Immunity boost

Our immunity is based on what percentage of our cells are in disrepair. Sickle cells in and of themselves don't necessarily fit that bill so you may be better off than you think.

For the cells that are issues, hydration, nutrition, and rest will fix. Translation electrolytes, dense meals, and a sleep rhythm.

The foundation is hydration. Without it nothing in your body gets done, so start there. Takes less than 4-hours to dial it in today. https://www.reddit.com/r/Sicklecell/comments/1lk73i1/whats_working_for_me_now_no_h2o/

If you feel cold or intense pain often, give this attention now to fix it. Make this moment a chance to learn and master the fundamentals before winter.

Support intestines and nervous system

This season you want to boost your gut and nervous systems. Think dairy, fermented foods, and fats in general.

Each helps to promote a formidable gut biome, which regulates the rest of your system.

Fats calm your nervous system. The more the better. Likewise, the more you eat the more fat you burn so it's Great for losing unwanted fat if that's a goal of yours. Learn more here: https://www.reddit.com/r/Sicklecell/comments/1p1k00b/whats_working_for_me_now_heavy_cream/

With a stronger gut, you digest food well and get most of the nutrients out of every bite you take. With a fitter nervous systems, you'll be the calmest you've ever been.

Feeling irritable, anxious, overly frustrated to the point of being out of character? It's your gut speaking to you to remedy things.

----

My daily and weekly routine includes the things I've shared, plus more I'll share on these subject in the following weeks.

It doesn't take much to make a measurable difference here you feel warmer, less pain, and the little pain you do feel is less intense.

All it takes is a bit of working in sync with the season.

Take Charge👊🏾💯


r/Sicklecell • • 5d ago

Question Severe lower back pain after sickle cell crisis hospitalization — has anyone experienced this?

10 Upvotes

​

Hi everyone,

My brother was hospitalized due to a sickle cell pain crisis and was discharged 4 days ago. Since then, he has been experiencing severe lower back pain, which has now worsened.

The pain is mainly in his lower back and sacral region. He can barely walk or move, and staying still in one position seems to provide some relief. He has no fever or pain in other areas.

His doctor says it may settle down over the next few days and wants to observe, but my brother feels this pain is different from what he experienced before.

My questions:

- Has anyone experienced similar pain after discharge that eventually settled down?

- Was it part of the sickle cell crisis, or did it turn out to be something else?

I'd appreciate hearing about your experiences. Thank you.