Hi everyone. I talked to Archer last Thursday about my Oxbryta lawsuit and I was told that my case has been sent to administrative for payment. Do you guys know how long it’ll take to get my first email or should I call and ask if I’ll be in the October batch??
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?
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
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?
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
I ASBOLUTLY hate this everytime I go to the emergency, I feel so humiliated when everyone there is fixing me while I'm in a crisis, they're watching me like i'm crazy or something while i'm suffering from huge pain, usually I always try to manage it at home, but when even morphine doesn't help that's where I need to call my mom so she can bring me to the hospital (I live super far from it and an ambulance can be costy).
It was just a bit of venting, but I hope for other people with Sickle cell, that they don't go often through that type of thing in Er, sincerly.
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. ~
I feel depressed, like I don't want to take my medications, and I hate having crises. Thanks to my family, I'm the one with fewer complications, and reading more testimonials about the disease in other countries makes me feel like I'm more privileged than others. I don't suffer from racism or being treated like a drug addict.
But since I've grown older, I've been having this trouble with taking anything and making it part of a daily routine. Even if I set reminders, it's like I lack the motivation to still be alive or something. That worries me about my future, regardless, because I think I can live long enough, but I worry about myself in the future and becoming more ill because of my stupidity.
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?