September is Sickle Cell Awareness Month and Sickle Cycle has been busy celebrating. We participated in the SCDAA Walk with the Stars in Baltimore, MD and the Walter E. Brandon Walk in Philadelphia, PA. I’m excited to announce that Team Sickle Cycle raised over $2,600 for sickle cell research and programs! We are truly grateful for the support to raise over our anticipated goal.
In addition to fundraising and participating in sickle cell walks, I wanted to highlight a patient who is doing awesome work in the community, Marqus Valentine from Sick Cells. I had the opportunity to speak with Marqus, who founded Sick Cells with his younger sister Ashley. At age 34, Marqus is a pet lover, film maker, and sickle cell advocate. Marqus has battled many complications with the blood disorder but he has used his experiences with sickle cell to help others. I am inspired by his journey and I hope you are as well once you read the interview below:
Charlotte: Hi Marqus, thank you for taking the opportunity to speak with Sickle Cycle. I'm so interested in learning about your story so lets start at the beginning. When were you diagnosed with Sick Cell Anemia (SS) and how did your family handle it?
Marqus: I was diagnosed with SS when I was 6 months old. My parents both have the trait but I am the only one in my immediate family with the disorder. I have 2 siblings; my brother Kevin is 4 years older than me and my sister Ashley is 5 years younger than me and they both have normal hemoglobin. My mom is a nurse so she was prepared but my dad and siblings had to get use to understanding sickle cell.
Charlotte: How was your childhood?
Marqus: I had a lot of issues growing up with keeping up with my peers such as riding bikes, playing sports, and dealing with the stigma. I would get dehydrated, tired, and then I would have to be hospitalized for a couple of days at a time and physically, I just couldn’t keep up with the other kids. When I would go to play outside, I had to make sure that I had my pain medicine with me and that I stayed hydrated.
Charlotte: Stigma is so important to talk about because people believe it’s a topic of the past.
Marqus: Really? Well, I remember my peers stopped playing with me because they thought they would get sickle cell not understanding that it’s not something you can catch. It’s a blood disorder and you can only get it through genetics. It really wasn’t so much as fear from my peers but more from their parents. The lack of understanding will cause fear from parents and soon I stopped getting invited to different parties.
Charlotte: Fear makes people do crazy things and that sucks that you had to experience that because no one should have to feel like an outcast but I’m sure that played a role in your self-confidence.
Marqus: It did. Socially, I really didn’t have a lot of friends because while my peers were building a relationship, I was in the hospital. As a child, I got my spleen and gallbladder removed, endoscopic sinus surgery, and had to get a Port-A-Cath internal catheter. After two cut downs, my veins could no longer take a standard IV. After the removal of my spleen, my doctors started me on penicillin, folic acid, and T3 (Tylenol) for pain.
Charlotte: Did your complications become manageable leading to your teenage years?
Marqus: (Laughs) I wish! As a teenager, more issues came up. For example, I had two endoscopic sinus surgeries and while in high school, I started having seizers. Before my junior year, I had full blown epilepsy. High school was difficult but I had great teachers and I worked extra hard to catch up on school work so I could graduate with my peers.
Charlotte: After high school you had to transfer from a children’s hospital to adult care which is a huge problem in the sickle cell community. Can you tell me about your experience?
Marqus: Transitioning was very hard because at the time, I was going to Children’s Memorial Hospital in Chicago and they had a policy that at age 18, you could go to Rush, UIC, or County. The problem was that those hospitals were not close to my house and the area hospitals near my house were not familiar with sickle cell. Thankfully, my mom learned that a doctor she worked with was opening a practice near our house and we started going to Edwards Hospital. My doctor is amazing and I wish that all sickle cell patients could have a doctor like mine.
Charlotte: Finding a good doctor is always a challenge and how I found all of my doctors have been by word of mouth. Now at 34, what are some of the complications you experience from sickle cell and how does that impact your life?
Marqus: I have a care giver that comes Monday-Friday that helps me do things around the house which is extremely helpful. My hip is deteriorating and is becoming more fragile which makes it more and more difficult to do every day things such as cooking, cleaning, and moving around. Walking up stairs takes a lot out of me. I have low oxygen so I have two concentrators. Due to multiple acute chests and pain crises, my lungs have scare tissue and have developed restrictive lung disease.
Charlotte: What medicines are you currently taking?
Marqus: I’m currently taking Folic Acid, Diludid for the pain, Hydroxyurea which helps create fetal hemoglobin so the body is producing more oxygen, and Keppra which helps decrease and prevent seizures.
Charlotte: People often don’t hear about the severity of sickle cell so thank you for sharing your experiences. You have had your fair share of battles with sickle cell so what made you start Sick Cells?
Marqus: I have had a lot of complications because of sickle cell which has forced me to advocate for myself. I want to help others that are battling with sickle cell learn how to advocate for themselves. Sick Cells started out as a school project while I was in film school. It was a good way to show the community and the world what people with sickle cell go through. Now through Sick Cells, we are able to influence policy, drive research and drug development. The goal is to encourage others.
Charlotte: I always like to end with final words. What do you want people to know?
Marqus: We [sickle cell patients] want people to know more about us. I want sickle cell to be similar to breast cancer where you have so many organizations that are able to support the cause. Through this collective effort, we will make a brighter future so that the disease no longer exists. It’s crazy because growing up, doctors told me that I would not see 20, then it was 30, etc. If you hear something over and over, you start to believe it. The night of my 30th birthday I was so freaked out because I thought I wasn’t going to live. So since I’m alive, I want to help others not to focus on the negative but give people encouragement to tell their stories. Every day my goal is to do something for sickle cell and I hope I encourage others to do the same.
I couldn’t have ended the interview any better. Thank you for sharing your story Marqus! To learn more about Marqus and his organization Sick Cells, please click here. Like Marqus said, we all can do something for the sickle cell community so I challenge you to think about what your action will be.