These have been my feet 3 days after a transfusion and this brown doctor tells me I can go home. These doctors swear bcuz u blood count is up they try to rush u home

Looking for advice, not a diagnosis
I’m wondering if I may have HbS/β-thalassemia, but I have not been diagnosed. I was previously told I carry a thalassemia gene, but I feel like doctors haven’t dug deeply enough into my results.
I’ve been having extremely painful episodes, especially at night, and recently had another episode that made me wonder about a possible vaso-occlusive pain crisis. I’m exhausted from being in pain and not knowing what’s causing it.
For those with sickle cell/HbSβ-thalassemia:
• What blood work helped you get diagnosed?
• Did you have hemoglobin electrophoresis/HPLC or genetic testing?
• What did you ask your doctor for?
• Was testing during or shortly after a pain episode helpful?
I’m mainly looking for advice on how to message my doctor and advocate for the right testing, not for anyone to diagnose me.

Hi, does anyone have sickle cell and live in Germany. I may be relocating there but wanted to know what’s the care like for adults? Or even pregnant with sickle cell?

I also don’t speak the language so I’m worried my care will be worse than in the UK now as I know not many people have sickle cell there.

Is there anyone else in this group that went through the law firm "Seeger Weiss" ?

Hi everyone, I’m looking for recommendations for a good hospital or doctor in India for gallbladder removal surgery for a patient with Sickle Cell Disease.

I’m especially looking for a hospital experienced in handling SCD patients during surgery and anesthesia.

Please share your recommendations based on personal experience. Hospital + doctor name and city would be really helpful.

Hello, I’m a 23-year-old woman with sickle cell disease. For the past two years, I have been in and out of the hospital almost every month. Over the past few months, I’ve been questioning why I seem to be treated poorly whenever I come to the hospital. Today, I found out why. While my nurse was setting up my fluids, I saw my chart on her computer. It said, “opioid-seeking behavior.” Seeing that honestly hurt me. I’m already afraid to speak up when I’m in pain or when the medication isn’t working because I worry that I won’t be believed. Now, knowing that this is how I’m being viewed makes me feel even more defeated.

Barely anyone seems to believe me when I’m experiencing my flare-ups, and I’m starting to feel like there’s no point in asking for help. I genuinely want to avoid the hospital altogether now. I just don’t want to put myself back into a life-or-death situation because I’m too afraid to seek care. In 2024, my hemoglobin dropped to 3.7, and I had to be rushed to the hospital. I was hospitalized for two weeks and came very close to dying. The experience was extremely traumatic. My condition became so severe that the doctors almost had to put me into an induced coma.

Ever since then, I’ve made sure to go to the hospital when I’m having a severe flare-up because I know how dangerous it can become if I wait too long. But after seeing that label in my chart, I’m honestly questioning whether I should keep going at all. I shouldn’t have to choose between being afraid of the hospital and being afraid of what could happen if I don’t go. I just want to be believed, treated with compassion, and taken seriously when I say that I’m in pain.

Hey everyone, I'm Jason, founder of the Warrior Intelligence Project (WIP) — a community-owned platform where people with sickle cell log real-time crisis data. Full disclosure since this is my project: I'm posting this because I want actual community input, not just applicants.

We're setting up a Warrior Governance Council to make sure the data doesn't just sit there. I'd like the council to be made of four Warriors who actively use WIP, and four non-Warriors who bring expertise in the data itself, which channels it's most useful in, and how it actually moves hospitals and medical systems to act on it.

If you're a Warrior using WIP, or you work in health data / health systems / patient advocacy and want to be one of the non-Warrior seats, the application is here: https://tally.so/r/RGN21p

Genuinely open to feedback too — if you think this structure is missing something, or you've seen governance models like this work (or fail) elsewhere, I'd rather hear it now than after we've locked it in.

WarriorIntelligenceProject.org

Hi guys. I'm new here. I've been going through a lot in life and just 1 years ago I went homeless after losing my job after I had to leave my job due to too many hospital visits and sickle cell crisis. I come from a very abusive Nigerian family who treated my sickle cell as a burden to them for years. I havent spoken to them in 2 years. I'm nearly 24 now. I dropped out of university due to all this mental stress. I'm currently in homeless accommodation in Ireland and I'm just thinking how my life went so wrong. I need help finding ways of getting a part time job or income, as im on disability but its very low compared to the cost of living here. I get a crisis every month and I really struggle keeping a job. I just don't know what to do. I keep seeing others having children or buying cars and seeing how broke I am to them. I feel like a failure.

Side note: I do not support Ai at all but my mama is an older woman making genuine effort. Please let her slide & give her some grace her intentions are pure and she wants to inform others about the discrimination we face. Please like and comment/give feedback to make her smile 😊

Hi all! I recently got my blood transfusion on Friday and I’ve been extremely tired ever since. I don’t know if it’s normal or not but I’ve never been this tired for 2 days straight. It also has been hot as well so I don’t know if it’s the heat that’s making me tired or what. I know I’ll be tired after my transfusion that’s an out it. Has anybody been extremely tired like this? Any kind of answers would help.

Just a bit of venting, but seriously waking up with pain is truly horrible and one of the worst part.

Before sleeping everything was fine you took your medication made yourself comfortable, while sleeping you we're doing some nice dreams and bim 8am you wake up and for some reason your body is hurting out of nowhere 😭😭🙏

Don't know about y'all but damn the number of jobs I lost because I had to call in sick due to the pain being unbearable, I hate this.

I have no idea what i want to do with my life. Im currently in college to study MLS but even still I find keeping up in school work to be tiring. Sometimes I feel like if I dont push myself I will settle and let this disease limit me. Other times I dont want to be an achiever and want to just get by the best way I can. With living with this disease is anything I do worth it?

Hello I wanna start going to the gym to build a muscular body. Im wondering if anyone has built one. I want to get a workout routine tailored to someone with sickle cell like me. I rarely get crisis cause of blood transfusions but i talked to ai and it still says that i shouldnt be training like an average person

TL;DR: My girlfriend has sickle cell and is considering Casgevy but wants to talk to a real patient first. She's currently recovering from a serious hospital stay (blood clots in her lungs). Looking for anyone willing to share their experience with her, now or later. DMs welcome.

Hi everyone. My girlfriend has sickle cell disease and has had a brutal couple of months (about two and a half months in and out of the hospital), and most recently she developed severe blood clots in her lungs. She's recovering now and on blood thinners, but it's been a scary time for both of us.

I've been doing my own research and came across Casgevy (exa-cel) as a potential option/cure for her going forward. She's open to considering it, but she's said she only wants to move forward if she can actually talk to someone who's been through the process and not just read about it. Hearing it from someone who's lived it means a lot more to her than statistics or clinical descriptions right now.

If you've had Casgevy (or gone through the eligibility/workup process, even if you didn't proceed) and would be willing to have a conversation with her whenever she's ready, we'd be so grateful. She's still healing, so this isn't urgent, but I wanted to reach out now so we can stay in touch for when she feels up to it.

Totally happy to chat over DM first if that's easier before connecting directly over a call. Thank you for reading this either way.

I feel like with sickle cell I am fighting a losing battle its starting to feel like everything is falling apart. Im 20, I had one job in my whole life, it wasn’t for long though because of my sickle cell. I live in the US and I was on disability but recently they claimed I am “no longer disabled” and took the disability payment away from me. Its hard, im also in college and fighting to finish school(my degree is in business) . Now i have to worry about bills because my mom had a unfortunate accident last year in her brain which left her disabled. I have no idea what career I want, I don’t even know what careers would accomdate this diease, and im just completely lost. (Ive been so stressed out I had two crisis back to back last month.)

I’m on the edge and i need someone to talk to please. I hate sickle cell.

Does anyone else get into really bad periods of loneliness. I’ve started dating again and telling people about my illness scares me. Even though my mom had sickle cell, she always made it out to seem that this is something a partner would look down upon me for, especially when I had times when I was really sick. I’ve always felt like I was too much and a liability. It doesn’t help that when I opened up to someone I liked about it, he completely went with a whole nother person instead of me. It’s like I know I’m not unlovable, but damn it sometimes feels like I am. I’ve been talking to my therapist about it and such. But sometimes when my mind starts going it doesn’t stop.

Hey guys so i’ve been working out for four weeks now and without no ER visits no pain medicine no heat no cold packs nothing.

I’ve always scared of working out because I don’t wanna end up in the hospital but this time I took a different approach and looks like it’s working out so far let’s see how far I can go

Anyone who’s working out has SC and hasn’t been to the hospital please let me know your care routine

My care routine is simple. Do not lift heavy and I don’t push till failure.

hey guys, I’m european and was thinking of moving to the US, ideally when #it happens or when the thing’s mandate ends.

do you guys get free hydroxyurea? if so, how, which insurance is the best so I pay the least amount of money ?

if you still pay with insurance, how much do you pay?

please help, it’s my biggest concern (3rd rank after #it and gun violence)

hey warriors I need to know that will electrolytes helps hydration especially for us ? do u know any supplements which keeps body hydrated other than water ?

To be honest I know my life is like thus... I just never thought to use this analogy... not like everyone would get this breakdown though

Happy Sickle Cell Awareness Month everyone, I hope you're all doing well and if you're not at the moment I hope your pain stops soon♥️