Demetria Jackson: Sickle Cell Spotlight
Q1: Could you first let our listeners know more about yourself and what type of SCD that you have?
A: I have sickle cell anemia SC which a lit bit less severe than SS which is the most sever. I am a wardrobe stylist and online boutique owner. I have an English-literature degree with a minor in political science from Florida State University and I live in Florida.
Q2: How did you choose your major?
A: Well, my degree is in English-literature, but fashion has always been my thing. I am currently a stylist and my long-term goals align with me being a wardrobe stylist. I do plan on going back to school for cooperate law and business. My main goal is to eventually learn how to run a business.
Q3: When you were in college did you have challenging moments related to your SCD. If so, how did you power though?
A: I’ve actually had a couple different time where I had to stop my semester and take time off which set me back 2 semesters. One semester I actually spent a month in the hospital due to complications within my apartment that caused a SC crisis to happen. Then I ended up in the hospital again during the summer for 2.5 weeks which caused me to drop all my summer classes. Those were my most severe cases, but I spent a few days here and there in the hospital throughout my entire time in school. I had to pretty much just keep on top and ahead of lessons and keep my mind focused to graduate.
Q4: Do you remember your first crisis and how your family handled it?
A: My first crisis that I can remember I was 7 years old and spent a month and a half in the hospital. I was only in first grade so all I really understood was that I was in excruciating pain but not why I was in the pain. All I remember is sleeping and being transferred from room to room. The one day that I did decide to get out of my room and walk around, I was in too much pain to even move and I had to drag myself back to my room. That’s when it really hit me that I had SCD and that it was a very serious situation.
Q5: Try to describe the level of pain that you’ve experienced.
A: For me, I would describe it as being stuck by needles and knives and having someone scrape the knives against your bones. It then gets really hard to move because everything gets really heavy and stiff. It gets to a point where your medication doesn’t even work, and you have to go to the hospital.
Q6: When your parents found out about your SC how did they handle it?
A: Well, my dad’s brother had SC and passed away from it, so my father was already well educated and an advocate for my uncle. He was always at the hospital with my uncle, advocating for him to doctors. So, with my dad the SC talk with me was kind of easy going and he just reminded me that he’ll always be an advocate for me along with my mom.
Q7: How important is it to have someone there for you when doctors aren’t listening to you?
A: Extremely important. While in the middle of a SC crisis doctors were trying to tell me that I didn’t have sickle cell. I was all alone, so my mom and dad blew up the hospital phones, calling and faxing over my medical records since I was new to the area and hospital and their acts eventually got me a new doctor who listened to me that night. And then they still ended up driving up to it in the hospital with me for a week to step in whenever someone wasn’t listening or over talked me.
Q8: Why do you think most people don’t take sickle cells so seriously and why there’s such a misunderstanding?
A: I believe the first thing is because you can’t actually see the disease. We know if we touch a person arm with a broken arm in a cast that they will be in pain, but you can’t fully understand that when you lift a SC patient arm how much pain they are really in because there’s no cast. Also lack of information and education. In textbooks out today, it is written that a SCD crisis last 3 days to 2 weeks at most. When in actuality if you do basic research on SC you will find that a crisis can last from 3 days to 3 months. There’s also this misconception. That black people have a higher pain tolerance, so some physicians don’t take us as serious when describing how much pain we are actually in. Hospitalist usually just have a quick textbook overview on what SC is unlike hematologist who actually study blood and understand exactly how we feel. Have great personal relationship with hematologist who is very involved. Lost close friend due to negligence from health professions who gave her wrong dosage of pain medication and overall just ignored her.
Q9: Do you think that it would be better for organizations that are strictly sickle cell focused like the JSCW foundation to have advocates within organization to advocate for patients within the United States.
A: I believe it is very important to have that. Just to have back up to call hospitals and advocate for you when you aren’t able to do so yourself is very important. I actually met a few advocates on clubhouse who gave us their personal information to call them when needed and they would call your hospital for you.
Q10: This disease mainly affects us as people of color, what do you think as a community we need to do better to educate ourselves?
A: Talking to sickle cell patients and getting a clear understanding from them rather than reading what’s online and assuming you know everything which is one of the biggest problems in the medical community in my opinion.
Q11: Any final words on sickle cell that you want to leave our listeners with?
A: Just try to understand how severe it really is and always take people serious no matter if they have the trait or disease. Do not write trait patients off. And if someone says they are in pain please help them and don’t let them sit in pain. The best thing for a sickle cell patient is to get the pain off of them.
Clubhouse and Instagram: Apryl Golden
Facebook: Demetria Jackson
