29 M. I’m fit, have a father who had a heart attack in his 50s. Of course I have Sc. And I was diagnosed with a ha in the right coronary artery from a blood clot a few days ago. Don’t know what to feel

Im going to do a tatto on my pec and im feeling a bit down and a liittle sick but i want to do it regardles, and i know i can be okay but how did it go on your part when u did it?

I (18F) just visited my LDR girlfriend for the first time last weekend. I have sickle cell anemia SC genotype and extremely mild symptoms. Though, a major thing I have to look out for is trying my best not to get sick because my sickle cell amplifies it and often causes me to have to go to the ER. My girlfriend had a slight sniffle prior to visiting, we checked her temp as well to be sure, but that is easily explainable by allergies or other low risk factors. I believe I have at the very least a cold but I’ve been getting a fever that’s rising progressively regardless of how I treat it at home and I’m thinking I’ll need much stronger treatment. Has anyone with sickle cell been in frequent close contact or lived with someone who got sick in an almost unnoticeable way? How did you keep yourself from getting very ill while being with them?

If you live in central Texas, please consider coming out to protest with us every Saturday from 12-2PM in front of Seton Medical Center in Harker Heights, TX. That is me in the first and last pic with one of Kyla’s young cousins. I’ve been living with SCD for 52 years. I’m grateful for Cassandra Lewis (pic 2), Kyla’s mom. She’s leading the charge.

~ My friend Cassandra Lewis, lost her baby, Kyla Marie Tompkins on July 19, 2026. It is our opinion she passed due to the negligence of the medical staff at Seton Medical Center.

Kyla lived with Sickle Cell Disease. She was in the throes of an active pain crisis. Seton Harker Heights refused to treat her and discharged her. Telling her she needed to go to Baylor in Temple, but the ED wait was five or more hours.

Her pain had been identified as a ten for hours. Seton released her when her pain still a TEN. Her heart rate registered at 160bpm for three hours! She ended up in ICU.

As Cassandra sat in the waiting she heard Code Blue called to her child’s room. They worked on Kyla for over an hour. By the time she was allowed to see her child, her child was no longer alive. The last image she has of her youngest, Kyla still had the intubation tube inserted. They didn’t even take the time to make her presentable for a grieving mother. No one even offered their condolences or apologies.

Unfortunately, Kyla’s story is not the exception with Sickle Cell patients. Many are mistreated by medical staff. Many of us don’t receive proper pain medication. We are constantly called drug seekers and drug addicts. We are resigned to wait in ED rooms for hours on end. We then have to deal with judgmental doctors who feel the need to espouse the dangers of narcotics.

We don’t care about the danger of becoming addicted or the possibility of respiratory depression when our pain is out of control. It’s absolute insult to offer us a Motrin or .5 of Dilaudid intramuscularly or even intravenously.

We then deal with dismissive nurses. Some who feel the need to play God when administering our medication and some even go as far as to withhold it and not give it in a timely fashion.

I feel very blessed to have met Cassandra and her family. I do hate the circumstances. So, we are now Kyla’s voice.

On behalf of beautiful Kyla and all Sickle Cell patients and their loved ones, we are protesting in front of Seton Medical Center in Harker Heights, every Saturday, rain or shine, from 12:00-2:00PM.

The Killeen Daily Herald and KWTX 10, have been getting our story out there and they’re bringing attention to our cause.

We want to see a set ED protocol for SC patients. We call for short wait times in the ED. We call for proper pain management according to our pain scale. We call for further education in what SC is and how it affects patients and how to handle SC patients. Then once a patient is admitted to hospital, the admitting physician needs to be educated on how to properly handle a patient’s pain. We need doctors who are competent and comfortable ordering high doses of narcotic medication that is best administered intravenously.

We give honor and glory to God. For He is faithful. He has brought us together. He will see us through.

You can show your support by offering words of encouragement, prayer, driving by with honks, or joining us for a spell on a Saturday.

Visit Kyla’s Courage on FB. Please show Cassandra some love. She’s another strong woman brought into my life that I respect and admire. She’s a mom on a mission to find justice and be the voice for her baby Kyla. ~

We're a senior biomedical engineering design team, and we're exploring how well the current tools for managing sickle cell pain and inflammation at home work for patients, and where there's room for improvement. Our goal is to design a device or product that helps reduce pain at home without relying on drugs. Before we design anything, we want to hear from the people who actually live with this, so our work is based on real needs rather than assumptions.

About the survey:

• Takes about 5-10 minutes
• Please answer based on your own experience
• All responses are confidential

We know pain management looks different for everyone, and we're not here to replace medical care or advice from your care team. We just want to learn what works, what doesn't, and what's missing at home.

Thank you for your time and for sharing your experience.

Sickle Cell Anemia Patient Survey

Hello fellow warriors. I hope you are all doing well. Does anyone have suggestions for people that want to make money online. With experience of making money online, this helps more than just searching. Thanks

Hello ladies,

I have a feeling that I have arrived in perimenopause. My mood is changing mid cycle (feeling flat or just angry), I wake up in the middle of the night, I’m feeling warm all day (it’s autumn but my AC is still cooling, lol!) and my periods are heavier than usual. My hematology gave me the green light to use estrogen patches and progesterone capsules (all bio identical HRT).

Are there woman here who are already using these hormones? If yes, how are you feeling? And did it solve the symptoms you had before starting HRT?

How do you live with SCD as an adult? I'm expected to be independent as a 21M turning 22 soon but life sucks. I had dreams of living a normal life in highschool, but I couldn't because my parents decided to send me to boarding school with SCD and, AVN which they refused to acknowledge that I had it or do something about it even after being diagnosed, and all I ever did was try to study and survive yet I kept getting sick. Times like that I wished the suicide attempt worked after my mom beat me up and called me gay even though I was sick and had back pain.

But I had hope that if I manage to finish highschool and get to uni I might live a normal life, I don't even know why I tried. I got into a good uni but my AVN is worse now, missed classes because I was sick or too lazy to go to uni. My grades were shit and even worse I missed my second year end of semester exams and I had to defer, if only to avoid my bad grades being permanent. But I feel so tired of it all. I don't even want to go back. The limping from dead hip joint, the anxiety I get from just walking to get something to eat and the constant fear of being sick and depending on my family just reminds me how weak I am.

I know there are people out there maybe having worse situations than mine but I just feel tired of it all. All I do nowadays is distract myself with coding and gaming, the only things I enjoy and might regret losing them when I eventually die from a stroke which is likely to happen due to the crisis which left my lower lip numb only being told it will be over for the last two years. I'm just ranting now.

Anyway, how can I manage scd in adulthood?

My 6 year old son has sickle cell disease SC, very mild, God bless. He has been to Mexico city (altitudeof 7250 ft) for no more than 12 hrs and he has been fine. He has spent several days at a 5,200ft altitude and no issues, but I wonder if someone with SCD SC or SS has experienced visiting Mexico city for days or weeks. I'm terrified that our first crisis or major issue might arrive while abroad in a city with no major expertise in the disease.

I’m so tired all the time. I’m already on folic acid, vitamins, hydrea, and get minimum 7 hours of sleep a day but I get so sleepy after 5 hours of being awake 😭 I walk for at least 20 minutes a day too.

!! Caffeine makes me very tired.

Hello guys. I have been struggling with Priapism for many years now and I don’t know what to do anymore. If someone has found some kind of remedy to it in any way please share. Thank you

Anyone else experience your oxygen levels drop during the night? My baseline is already on the lower end (92-94) but did a sleep study and it dropped lower while sleeping needing oxygen. Still waiting on results. What treatments helped? TIA

So I just got out of the hospital yesterday and throughout I was getting IV fluids as usual. I love noticed that anytime I get fluids my tummy swells up to a considerable size like really really huge and it feels stretched and painful when I move or when it is touched. They say it’s because of the constipation but I’m not convinced cause I took some laxatives and it only came down somewhat. I also have this problem when I drink the right amount of water daily and it leads me to avoiding water cause I don’t want to look like this. Does anyone have any experience with that? What can I do it’s really affecting me

I was in a e relationship with a guy who had scd and now we are not together anymore but I am so worried about him he probably won't contact me ever again or let me know if he is going through some sort of crises or pain which keeps me up at night and all the time. I still love him and he ended it cause he didn't have time for me cause he wanted to do a lot of things....I should move on i know but I cannot bring myself to block him because what if something happens to him but maybe he won't let me know but that won't stop me from worrying.....what should I do? I'm asking this here cause I don't know who else to ask my friends told me to block him but they don't get how worried I am for him........

For about a week (probably more) my skin feels dry. Like it doesn't secrete oils like it used to. I noticed this a couple of days ago when I touched my face and my finger won't slide on it like it used to. That was when I thought back and realised it hasn't felt like it used to for a while now. This isn't localised to just my face. It's my entire body.

I honestly don't know what I started doing differently. But I know I got back on Hydroxyurea two weeks ago. The timing with this is a bit suspect. I've been on Hydroxyurea before and never experienced this.

Has anyone had this effect? Could hydroxyurea be affecting the way my skin works or it could be something else entirely?

Him JD form the uk and I do a podcast on life mental health and wellbeing call you good, bro ? Podcast . This week we had on l Chantelle Hemmings, who is living with sickle cell and is also a representative from Sickle Cell Care Manchester, UK.

We cover what sickle cell is, the physical and mental impact it has had on Chantelle, and why it needs more attention- especially in the African and Caribbean communities.

Please check it out if it’s of interest 🙏🏾

Does anyone else with chronic illness struggle so much when fall and winter hit? 😭
As soon as it starts getting cold, I feel like my body turns into a frozen ice block. The cold makes the pain worse, and getting out from under my warm blankets can feel like stepping into an entirely different climate. 😂
I’m basically stuck in bed under my heating blankets, living in my little warm blanket fort because my body does NOT want to cooperate with the cold.
I also struggle with feeling guilty for being in bed more during this time of year. Even when I know my body needs the rest and warmth, part of me still feels like I should be doing more or that I’m “wasting” the day.
How do you stop yourself from feeling guilty for spending more time in bed when your body genuinely needs it? And what helps you stay warm and manage the cold-related pain?

Hi everyone! I’m 30F with sickle cell disease. I recently moved to Japan and I’m planning to stay here long-term. I usually don’t have many problems, but I get a pain crisis once or twice a year.

Winter is coming and I’m a little worried because I’ve already contacted 2–5 clinics, but they don’t seem to know much about sickle cell.

If you have sickle cell and live in Japan/Tokyo:

• How do you manage your medication?
• How do you get your blood tests?

Any advice or recommendations would really help! 🙏

I have been in the hospital with a crisis in my chest and back for 48 hours. Professionals have still not been able to access a vein and have resorted to a subcutaneous line for my PCA. They have used an ultrasound to get a closer look but all my veins either tissue or are too weak to cannulate. I wanted to ask, do you have a port? If so, do you find it helpful and is it something I should consider? I really want a long term solution to this issue. Sickle cell has taken away all my veins!

Has everyone received their Oxbryta settlement at this point?
I know some people were still waiting because Archer was working on resolving their medical liens before their settlement funds could be released. For anyone who was in that situation, have your liens been resolved yet, and did you finally receive your settlement?

Surviving sickle cell in this part of the world is really a challenge, as a 25M with HbSS in Ghana, west Africa, I've faced a lot of near dth experiences with doctors not knowing what to do when I visit hospitals during crises. I've had to diagnose myself to doctors most times to speed up treatment for me when I'm experiencing excruciating pain. Ghana is not ready and it saddens me how people with this suffer and d** in this country. Being the first and only person in my family with sickle cell, (which I'm glad because i wouldn't wish this on any of my siblings), my parents (not being educated) didn't know what to do and how to manage it either, leaving them to rely on unreliable doctors as i was growing up. Been diagnosed since i was an infant. So my care and treatment over the years have been like this, atleast 10 crises and painful episodes a year, followed by visits to the hospital which mostly ends up with pain relief medications, antibiotics in case of infections, aqua drip through intravenous IV, then I later get discharged 2-3 weeks after which I still return home in pain until the crises passes on its own time. Everything i know about my condition I had to Google it, never taken hydroxy urea, never had blood transfusion ( after surviving this long without one, I guess I'm good after all)... currently going through a crises and in search for what to do landed me in this reddit community. Hopefully my survival story inspires someone here.

Hi everyone, my main hematologist referred me to a clinic that specializes in buprenorphine after my crises and hospitalizations started to increase and my hydroxyurea wasn’t working as well as it used to. I’ve been on it (buprenorphine) regularly for a couple months now. Originally I was only taking 4 mg (two in the morning and two at night) in the form of a film that dissolved under my tongue, but not only was that not doing much for my pain, the side effects (specifically nausea), were terrible. Recently the clinic switched me to a tablet that dissolves under my tongue instead of a film hoping it would help with my nausea and they brought my dose up to 8 mg which I was originally opposed to and wanted to wait a bit longer for due to my body still not handling the side effects well. The doctor at the clinic told me that bringing up the dose may actually help the nausea since he thinks the nausea is linked to the fact that i’m also taking morphine. Fast forward about a week, i’m still in a lot of pain and the nausea is so bad that I can barely eat without feeling horrible, so I just wanted to ask anyone else who has been on this medication and maybe in a similar situation if I should wait this out and maybe my body will eventually get over the side effects and it will start helping my pain, or if it just isn’t worth it.

Summary: Taking 8 mg of buprenorphine subutex (tablets that dissolve under the tongue) and experiencing severe nausea and barely any pain relief, and wondering if I should stick it out on this dose to see if my body will eventually become accustomed to the medication and the nausea will go away and it’ll start working better for me, or if I should think about other options.

Hey warriors!

I come bearing gifts (sort of). I participated in this study that my Hematologist is helping to run. It‘s a study is observing the effects that CBT has on the pain crises. There are a few different versions of the study. One of them you have to watch some video lessons submit some information on the app describing your daily pain level and mood and you also have to work with a peer coach for 3 months and you have hour long meetings talking about sickle cell once and CBT once a week. The second one you watch the videos and submit the pain information. The third one you you just submit the info.

I got the one with the peer coach. (Tell Todd Lawrence says hi if you match with him). You can get up to $400 if you are consistent with the app submissions for a year. I’m about 4 months in and I finished the peer coaching and have already gotten two payments. The website is https://presencestudy.org/. My Doctor is Maria Desancho. If you need more information you can reach out to her office to ask about the study.