Sickle cell disease (SCD) is a red blood cell disorder. There are multiple types of SCD. The disease varies based on what type of hemoglobin a person has. Our gallery present the faces and stories from people with various types of hemoglobin. Keep scrolling to even find medical professionals and other advocates.
Sickle Cell Disease Community
"Hello I'm Chantelle Rodgers and today I AM TAKING OVER!!!! I am a 38 year old sickle cell patient (SS) and I live in Rotterdam (NL, Europe)."
"My name is Elijah M. Powell. I am a last semester Senior at Morehouse College in Atlanta, Ga...[and] I have sickle cell disease-SS."
"We get the name calling. They stereotype us. They either say we're here just for the drugs or we're just drug addicts."
"I went and talked to the teachers. She ended up with such good friends, and the teachers were just so good.
"I want people that don't have sickle cell to be more aware of sickle cell and be a bit more cautious, a little bit more helpful, a little bit more resourceful."
"Always smile. Always smile, no matter what's going on. Show your smile because when you smile, you're happy. Think positive."
"Well, like pain. When it's cold outside. My locker used to be by the door. Every time it opens it was cold..."
"I missed over 90 days, and they had to send the school tutors so when I went back to school, I'm still with the rest of the class."
"[My friends] ask me what it is, and where did it come from. I explain the blood sickles, and it stops blood flow."
"What gives me hope? I hope that they find a cure. The cures and medications that they have now are really good."
"It's already a silent disease [and] a lot of people don't talk about it. My husband was in the military..."
“Teachers know a lot because of my mother. Me, I never mentioned anything about [SCD] because I feel like once you mention it to everybody..."
"Sickle cell disease is like a full time life, full time child. Under my Bachelor's degree I got sick a lot. I had to miss a lot of school some classes."
"I need much exercise because of the prosthesis in my hip and shoulder. I enjoy working out."
"Since I was 11, I've tried to spread awareness and advocate for sickle cell. I was the poster child for the local chapter of our Red Cross blood drives."
"Always make your decisions on life on good days. One thing for sure, there is more good than bad days.
"I went there thinking, 'It's just college,' even though people were like, 'Oh, it's cold and may affect you.'"
"We're not faking it. Sometimes I could walk maybe 50 yards, and I'm exhausted or I don't have the energy..."
"I'm going to Marymount University in January. I've actually been out of school for about two years between community college and fulfilling my bachelors. I love painting, drawing."
"I just turned 40! I am an entrepreneur because I kept catching all the sicknesses from the office. I work from home.I studied accounting because I knew I could work from home when I needed to. No one will take me before my time."
"A lot of people don't know about sickle cell disease until their child is actually born with it. It's disheartening because this is not a disease that's out there like cancer or other diseases where they have more funding and they do more awareness for it."
"SCD has taught me to be strong and fight against the disease...and learn as many things as I can about my illness..."
"I feel like we're judged when we say we need something for pain. Stop judging us. You can't tell me how much pain i'm in. Just because I'm not crying, you can't tell me I'm not in pain."
"Some days I have doctor's appointments. First we have to get there, sign in, then wait. Then we have to see the doctor. I bring my water bottle every day.”
"Peyton has sickle cell SS, but at age 5, she hasn't really had any complications. She just turned 5. A lot of her hospitalizations have been around fevers. No pain crises."
"I'm not supposed to be here. I'm not supposed to do a lot of things. I went on to college, accounting degree, and had several careers at Fortune 500 companies."
"My parents were told I had sickle cell through newborn screening, but I had no idea until I was 12.
"I have sickle cell ss and have been a patient at UIC Hospital all my life. I'm going to be 51 years old. Right now, my illness is getting worse because as I get older, I'm having a lot of leg problems."
"I actually started with uncle when I was 12, and then I went out from there. When I was 16, I finally started my own, just small doing cookies and sweets. Then I got older, and I was able to work at my dad’s."
"During my finals, I was trying to take my test, and I just couldn't finish my test. I had to rush to the hospital. My mom and dad took me and they brought me here to the ER."
“We got a diagnosis of my daughter having sickle cell disease when she was two. She has SS. Back then, it wasn't a whole lot known about sickle cell. We didn't know at the time they were crises, but she would just all of a sudden start screaming and hollering for no apparent reason.”
“That's actually what I talk about a lot on my YouTube channel, Nesha's Life. Basically, how to still live a life, go on vacation with my family, go out with my friends...my thing is, sickle cell can't stop me...”
“There is a cure, but everybody can't afford it, and everybody ain't medically ready for it, or everybody ain't got the family structure to take it on. They got a stem cell, but you gotta have a medical match.”
“When you go into the hospitals in a crisis situation, we're still at the point we're trying to educate the triage nurses when you bring your kid in. Your kid was okay yesterday; now they're sick.”
“We didn't know Daddy had sickle cell trait until seven days after Olivia was born.”
“Like around junior or senior year, I got sick a lot so I wasn't able to graduate with the class. Well, I was able to graduate because one of the teachers came to my house and helped me finish.”
My first child with sickle cell. I would say that it is hard, but just make sure that you continue to go to the doctor. Make every appointment. Please do not miss an appointment.
"Well, I've been a nurse for 35-40 years, and I've specifically dedicated it to sickle cell for the last 20 years or so.
"I would get them more access to physical therapy. One of my big things that I'd like to work on is getting more non-pharmacological treatment."
"My oldest son went to Blue Lake Fine Arts Camp, and Marqus wanted to go as well. They all played instruments. The camp was in Michigan, outdoors, lots of fresh air, but they had never had a camper with sickle cell disease attend.
"With sickle cell, we typically only see the patients who are in crisis which means they are having a lot of pain. I am patient with them. I understand they are in pain, and it’s frustrating. I can empathize with that.
Caregivers and Advocates
"I wish that people just actually knew of the hardships, the physical hardships that it had. I think that we would be more conscious of it and more aware of it and more empathetic."
"I wish people would understand that it's not just a black disease. That it deserves the same consideration as other diseases, because it really does affect a broad range of people. It just really does."
"I was a single parent. His father and I divorced when my son turned one. I didn't know anything much about sickle cell disease, so when they sent me a letter to state that my son had the sickle cell disease..."
"I’ve seen it, and we’ve experienced it many times. The thing is, Marqus, he’s quiet, but when he’s in pain everybody knows. It gets me mad especially when they think ‘well, you don’t look like you’re in pain.’"