Sending Summer Off with Updates from Sick Cells!

Sickle Cell Awareness Month

September has been an adventure for the Sick Cells team! The team spent this year’s Sickle Cell Awareness Month sharing stories and spreading awareness during their Washington, D.C. debut. Following our visit with a sickle cell adult support group at The University of Illinois Chicago (UIC) in August, the team has started sharing the stories from those interviewed.

Sick Cell’s also had their own booth on the National Mall during Washington, D.C.’s Stomp Out Sickle Cell Walk. Keep scrolling for photos from that day and some news you can use!

A Minute With Marqus

Marqus is doing great and had an excellent time at the DC Stomp Out Sickle Cell Walk!

I made it to DC and the Stomp Out Sickle Cell Walk! The trip went smoothly, apart from some tiny hiccups, but it wouldn't be a Valentine adventure without them. Before heading to DC, we got all my medications, leg wound dressings, sprays, creams, and electric scooter approved to carry on. When we got to the security line, the scooter broke down. Whoops. I need the scooter or a wheelchair because I get tired quickly when walking and my leg wounds sometimes add to the discomfort. The great news is that we warned Ashley of the minor mishap and she was able to track down a wheelchair by the time my flight landed. Big thanks to Capitol Medical Supply for working with us in a time crunch.

Being at the walk in DC was awesome. I finally got to talk with all the people I didn’t get to meet in June after I was hospitalized and had to cancel a DC trip. Another great thing about the DC walk was the turnout of people spreading awareness of sickle cell. I haven’t seen that many people support sickle cell since 2014 when I attended the FDA town hall meeting for SCD.

Not to mention, the Sick Cells team looked great in our shirts with a logo that I designed some time ago. It was great seeing hard work come to life. The back of the shirts had our sponsor, Enluxtra's, logo on them too. I went from being a customer to actually working with them.

The icing on the cake, for me, was to meet all of the sickle cell warriors. On one of the hottest days in DC history, people with sickle cell and their families still showed up. People with sickle cell are extremely sensitive to the weather. Being too hot or too cold can put someone into a crisis. However, so many people shared their stories with us and worked around the heat. That's the true sickle cell spirit. Nothing keeps a warrior down. I’m looking forward to next year’s walk on the National Mall. Hopefully it’s not as hot, haha.

Sick Cells at the Nation's Capitol

On September 10th, the Sick Cells team went to Washington, D.C. to participate in the Stomp Out Sickle Walk 5K on the National Mall. The volunteers showed up in great spirits and with loads of energy that attracted the crowd.

During the walk, Adam Zoellner, Diri Davis, and Kelly Seigal walked the 5K to recruit people to stop by.

Rachel Stewart, Maria DiFuccia, Patrick Hackett, and Morenike Ayo-Vaugh stayed at the booth to help participants fill out paperwork and later record their stories about their lives with SCD.

Finally, our photographers, Yohan Perera and Michelle Marshall, captured candid moments of the event on camera.

This event went as smooth as butter because of the people that care about the Valentines and about sickle cell disease. We plan to continue work like this in our effort to spread awareness.

Putting a Face On Sickle Cell Disease

Throughout September, Sickle Cell Awareness Month, the team has been sharing stories from people who are impacted by SCD. Our goal is to put a face on this often invisible and misunderstood disease while highlighting the resilience that keeps the sickle cell community strong. Over the course of this fall and into winter, the team will spotlight stories from the field. Please visit our Facebook for more photos and excerpts from members of this support group.

Spotlight Interview: Jackie & Jaleesa

In August, the Sick Cells team visited University of Illinois at Chicago to speak with members of an adult sickle cell support group. This month, we spotlight the stories of Jackie and Jaleesa, a mother-daughter duo who work together to maintain Jackie's sickle cell. We've included highlights from both of their interviews below.

Sick Cells: When you did work for March of Dimes, and before you started feeling kind of bad, even then, did you have moments where sickle cell was affecting you?

Jackie: It didn't hurt me. Yeah, I was able to work just fine. Just now, since I got older, and I can't seem to kick these seizures, as well as the sickle cell. My sickle cell is no longer hurting me. It's the seizure that I'm always concerned about. I can't go nowhere or do anything because if I go anywhere I got to have somebody around me.

Okay. Was it important to you to have children?

My daughter, she has sickle cell, just the trait. I never wanted to give her the disease. My daughter was born in 88. I wasn't trying, because having a child with sickle cell is not right. Not to me, because they go through so much.

You didn't want them to go through what you went through?

Right. I didn't want my daughter to go through this. She's the one who find me in the bathtub, when I was bloody. That's when they discovered I had seizures, uncontrollable seizures.

When did the seizures start?

Maybe 8 or 9 years ago. There's a lot I cannot do, because now I have uncontrollable seizures. I don't know when the seizures come on. My sisters tell me that they come on me, and they go off, but I don't know what happens when they come on me. If I know I had a seizure, I'm tired, and that's when I know I had a seizure. I bruise my face or whatever. A lot of things I cannot do. A lot of things I cannot take. I don't want to react my sickle cell or react my seizure.

Me, personally, I feel as though the seizures want to party without me. They want to have a party without me. They're not inviting me to it. That's the thing that I don't like.

Sick Cells: Did you live at home when you were going to college too?

Jaleesa: No, I didn't.

How was your mom taken care of when you weren't living with her?

I had family try to do what they can, but my mom is a very private person. She won't ask for help. The only way I've been able to help her this long is because I'm her daughter. I see her in pain and once I noticed that my family wasn't really doing a good enough job, I just dropped out and came home.

Wow. That's crazy.

Yeah. I transferred and had to finish school here, but I wouldn't have it any other way. It was really hectic, missing those phone calls. I'm an only child so I talk to my mom a lot and missing calls or anything like that, I know she's sick and I would have to come home.

Now that you're post-college and you're working, your current job, is that affected by this situation?

I drive for Uber. Driving, it's fine because I try to get over to check on her often. Before I used to work a fair amount a ways away, and I didn't like that because with sickle cell, the pain comes on sudden. A cool breeze or the weather will change and maybe she'll be fine by 5 o'clock, but at 6 or 7, she's not fine. If I have to drive a hour and a half or two hours to get to work, I can't take jobs like that. This job I have is fine because at any given time if she needs me, I can get to her.

News You Can Use

The National Institute of Health (NIH) INSIGHT is currently doing a study for people who have sickle cell or sickle cell disease trait OR those related to someone with sickle cell disease or sickle cell trait.

Learn more information about the research study.