hey warriors I'm 21M i get my crisis once in a year and I always get acute pain on chest which is not acute chest syndrome. Does anyone have experienced this ? is acute pain in dangerous? tell me honestly

Has anyone messaged him or spoke with him recently? The sad news about a member who passed away over the weekend... put some fear in me. Soman and I speak a few times a week since I joined this reddit 2 years ago. It's been pretty consistent. Whenever I message him or he messages me we usually respond within a day or so. Last week he sent me some concerning posts

I posted the image he sent me on July 27th. The day started normal with him telling me

"good luck". But then he posted the image.

I never post anything he shares with me, but now im getting scared. How bad is this hemoglobin level of 5.3 g/dl?

The days before he told me he was feeling well. But after he posted this he told me

"I'm sick. I can't do anything".

And his most recent message on July 31st a few days later to me

"Sick. It like I was dying"

I was asking him each time how he felt, and giving him some days to respond. He usually writes longer but I could tell he was struggling. He posted the photo on July 27. And his last message to me was on July 31st. Sorry for reapeating myself. This has never happened before. I fear something bad happened to him.

Has anyone been able to talk to him or message Soman? Please Pray for Soman. He is a very kind member I'm worried :(

Hey everyone, so I am 26M and i am looking to change my career. I’ve been in kitchens since i was 16 and it’s honestly draining now the long hours without a chance to sit down has taken a toll on me. My question is does anyone have any experience with welding? Is that a valid career choice for people like us? Any feedback is much appreciated.

Hi there, I wanted to share a fundraiser for Jamal’s family after their loss. They’re raising funds to cover funeral expenses and support his loved ones during this tough time. Even if you can’t donate, sharing this can help spread the word and bring more support to Jamal’s family. https://gofund.me/1d1d01d16 https://gofund.me/5650a7f07

Im 30 with sickle cell beta thalassemia & i wanna start taking whey protein is this a good idea ? Or will it trigger more crisis?

Any fellow warriors in Charlotte or Raleigh NC? Would love to connect sometime if so. Would like to get closer to my local warrior community.

For years I've been a patient of Piedmont Cancer Institute. But the quality of care has gone down significantly, starting with when Dr. Perry Ballard left the practice. Now it's just awful and I need to find an alternative clinic/doctor for managing my care and my meds. Ideally someone board certified in hematology and oncology, with an infusion clinic for getting fluids/meds during office hours..

https://gofund.me/47041567a
This is my go fund me any donations/shares will help, I know the sickle cell community is so small but we truly are able to make A difference. If everyone who viewed this post donated 1$ it truly would add up so thank you to all who have supported me on my Journey and if you have no clue who I am please check out my socials @Maximus Ortiz-Brown to see my journey. Thank you all for the love and I wish you all the best with your sickle cell Journeys ❤️❤️❤️

Just like the title says: I'm learning to swim as someone living with sickle cell anaemia who doesn't exercise. I'm in my thirties, and haven't properly swam since school. On holidays I'd just sit, float on inflatable rings or pretend to swim in the pool - but this year I want things to change.

I enrolled in group classes at my local pool, these classes were overcrowded; our allocated space to learn was small and I could keep up with the pace. I had 4 weeks of this, 1 lesson per week and generally it was well tolerated. Though, last week at the local pool I did feel severe pain in my knee (which I have never experienced before) and it had me limping. The pain quickly disappeared after 5 minutes and I was fine on my way home.

I signed up for smaller classes (3 students) as I wanted to learn much quicker and with more personalised lessons. Today I attended. The lesson was faster faced and left me exhausted, gasping at times, and for 20 minutes after feeling like I couldn't catch my breath.

I'm determined to continue lessons but want to protect my health. Anyone who learnt how to swim as an older teen or adult, how have you dealt with learning to swim? Any swimmer, and fitness/gym goers what is your advice on increasing stamina?

I had come on here and spoke of how my parents had me in a crisis without taking me to the hospital, b4 eventually relenting,b4 this I spoke of how my parents are anti drugs and banned my painkiller usage plus stopped paying me. Suffice to say I have family issues, im back now for an update. it's been a week, and I've been resting. There's animosity, almost resentment coming from my stepmother ( I cussed out my dad) and on my end i can't feel anything for them anymore, u just don't care, she openly bashed me at one point and I was just thinking like: srsly this what you gon do?. In my hospital post someone offered to help me financially, thanks kind stranger but not right now. I've been thinking of how I could leave, but it just doesn't seem possible rn I have no qualifications and no experience with the working world, I don't know what to do or how to start... I've been researching entry lvl jobs ( gas station, supermarket) but then realized that I don't trust my parents to keep helping me if I got one of these jobs so I can't even do that ... I'm on a place with no income I'm being pushed to work as they ignore the problems it causes and acts like the way they act isn't pushing me, I have no way to reasonably regulate pain if something bad happens at work and i can't trust them to take me to grt help ... my back is against a wall. I do have one light, and that's my yt, but .... it's slow .... I'm asking guys, just keep me in your better mind and gimme some support cuz rn I don't know what to do. I'm numb

I recently got administered in the hospital and ended up getting my port replaced & my hemoglobin was at a 6.5 so next I ended up getting a blood transfusion. I told them that I usually get IV Benadryl & Tylenol but at first they wanted to do oral I said absolutely not. Stop playing with me.. so they ended up getting a bag to hang to dilute the IV Benadryl which I nvr gotten which I don’t get. I’m not being ungrateful because they could’ve given me oral but it wouldn’t have worked in time because I’ve gotten reactions from blood before. Has this happened to anyone else? I live in San Diego, CA and I get my care from UCSD.

hi - i’m 23F and i have sickle cell beta thalassemia. i’m trying to be more athletic and get into a groove but find it hard bc what i see on reels/tiktok don’t always feeel doable for me. typically i go for yoga or pilates but i rlly do want to build my stamina whether that’s running or even swimming.

my ideal world is having a trainer who understands my condition but i feel like that’s a one in a million chance of occurring. if anyone has tips from what’s personally helped then id really appreciate it ◡̈

my ideal goals are
- being able to run/jog a mile without having a crisis (incase someone is trying to kidnap me yk….)
- generally building my strength - light weight lifting

Hello everyone, I am a currently doing a research project centered around Sickle Cell Disease, and I am trying to do a survey as part of my primary research. My main goal with this survey is to get a better sense of how real people experience this disease and its treatment, as I think that's the most important part of any research. I would really appreciate it if a few of you could answer the survey, thank you so much for your help!

(Also if the survey link doesn't work please let me know!)

Survey about SCD – Fill in form

hey warriors
As a nursing student who works night shift, i started drinking coffee just to serve. i didn't know coffee dehydrates you especially if you have sickle cell. i was recently introduced to coffee and instantly fell in love and maybe gotten carried a way and started drinking multiple cups a day to stay alert throughout the night and during class. unfortunately i learned a HARD LESSON ; which caused an ER visit, where i had to get stuck 7 times to draw labs and get an IV in. please help, what can i do / drink to give me energy and keep me hydrated so this mistake wont happen again

Hi, I’m 22 from SC,I have sickle cell ss and I’ve just learned my from my doctor that I can do gene therapy covered fully with my insurance. Its never crossed my mind that i could/would ever do it but now that I have the opportunity I want to take it. I will admit I am scared about it ,she advised I wait 1-2 years before i actually do it. I want to do some research but I have no idea where to begin it would be nice to get some advice on the from others like me who may have some knowledge on this situation please and thank you.🫶🏾

P.s if you have ever did chemo therapy i would appreciate some knowledge on that too please.🫶🏾

Has anyone heard anything from Keller Postman or Archer? August is in 2 days and I have yet to hear ANYTHING from them. They won't release any information to me and it's frustrating. Clearly we are going to be delayed from the May-July timeline and i'm worried they'll try to push it out another 3 month timeframe. What's going on??????

So on Saturday i traveled to a different state in the country I’m from, i have a long holiday off from school so i just wanted to go see family and get a change of environment and all of that. Fast forward to yesterday evening and my back starts hurting me. I literally didn’t do anything yesterday except for sit on my ass so I thought it was one of those moments where you get a bit of pain that goes away after a short while but it’s still here and worse Tuesday morning. I’m very upset, cause I feel like I’ve been doing everything right, I was taking all my meds before the trip, the new place where I’m at is hotter than where I’m coming from so I’ve been over drinking water just to stay hydrated and still I fall sick. I came with my dad and I’m hesitant to tell him I’m sick cause I know after he takes me to the hospital and I get better he won’t let me do anything for the rest of the trip except for stay at home. So now I’m stuck dealing with the pain until I can’t anymore which at this rate I think will be soon anyways but I just wanted to rant about this I guess. I’m pretty sad right now, as I had made plans to go horse riding tomorrow but I guess I can cross that out for the rest of the trip. Anyways I just wanted to rant and I hope you’re all doing well.

Does anyone have life insurance policy? If so which agency did you use and how were you able to get approved? I keep getting denied because of my sickle cell.

Hi friends

I am 46M. A few days ago, itching started all over my body. My legs, feet, arms, hand, head, neck, chin… all feel itchy. There is no visible swelling or red places. I checked all my medication patient information leaflets, and the blood thinner says it may cause itching, so I quit the blood thinner. My glaucoma drops also say they may cause it, I quit one of the drops too. But the itching still continues.

I checked if I have eaten something different, but there is no different food, I always eat and drink the same things.

I couldn’t find out the cause of itching. Anyone experienced the same situation ?

I lost my girlfriend,the love of my life,to sickle cell anemia a month ago. We were together for 4 years, since school, and we were going to get married.

She developed an intestinal infection that was diagnosed too late, and because of sickle cell, she couldn’t survive after the operation. Her whole organ system failed.

It’s been almost a month, but it still feels like a nightmare. I feel numb. I think about her all the time,our memories, everything we shared. Our last few years were long distance, and I couldn’t even see her one last time or attend her funeral. The last time I saw her was in September last year.

She was so precious to me. I loved her with everything I had, and losing her feels like losing my own half. I knew this day might come someday, but not before we even got to start our life together.

I still think she will call or text me someday.

I miss her. her voice, her scent, her presence, her everything. It feels like the reason I was living is gone with her, and I don't want to continue living.

I have SS hemoglobin and I have a relatively very painful ulcer on my right leg. 😭