I was diagnosed at age 3 with sickle/beta-thal. The doctors told my mom that it wasn’t a big deal and that I would never be hospitalized. Ha! After I started graduate school I did a rotation in the adult sickle cell clinic/research lab and there discovered that I actually carry two hemoglobin mutations – HbS and HbMonroe. HbMonroe is a thalassemic-like trait which probably explains the original misdiagnosis.
I have had daily pain since about age 13. I typically have a major crisis (requiring hospitalization) 3-4 times a year. The minor crisis that I handle at home occur much more frequently, but over the years have become much less intense.
How did you get started in your career? What made you choose Biological sciences as your specialty?
I have always loved the health sciences. As a child my favorite toys were my microscope, doctor’s kit and science kit. In high school I participated in the math and science magnet program and found that I loved classes that involved using the scientific method as an approach to solve problems. In college I majored in Biochemistry and Molecular Biology with the intention of applying to M.D./Ph.D. programs throughout the U.S. After a long bout with many of the more severe manifestations of sickle cell (lasting three years) I decided to alter my plans slightly and enter a career field that would allow me to place emphasis on biomedical research, specifically the study of sickle cell disease.
Well I can’t wait until you are all done with studying so you can find a cure for us:) What education was required to get to your position?
I obtained a bachelors in Biochemistry and Molecular Biology, completed doctoral research in Molecular Hematology and am currently in the final months of completing and defending my doctoral thesis (Ph.D.) in the field of Regenerative Medicine.
Wow Congratulations on all your accomplishments. Focusing back on your career, what is it that you do exactly? What is a typical day on your job?
I am a graduate research scientist. My day typically involves performing scientific experiments designed to answer questions that I have regarding 1) the reason for the major differences in the clinical manifestations of sickle cell disease and 2) the molecular mechanisms involved in cell regeneration. As you can probably guess the first project is the one that I am the most excited about (although both are very important). I have noticed that you can line up ten people with sickle cell disease (SS) and we will all have hugely differing symptoms. I want to understand why that is. My day is focused around designing and performing experiments to answer these questions.
What coping strategies did you have to use to get you through school and in your career?
I have relied heavily on my Faith in God and the close-knit social structure (family and friends) that I have around me. I also learned with time that allowing myself to stress over deadlines, exams, research grants, or even personal matters was not in my best interest. Stress seems to be a major factor in precipitating a sickle crisis for me. Simple stress-relieving techniques like taking a day to do absolutely nothing, reading a book not because it was required, but simply for the joy of reading it, watching something incredibly stupid on television and learning to give everything else over to God in prayer became necessary components in getting through the stress of school, work and everyday life.
How has sickle cell limited your career or life (if there are any limits)?
I made the decision several years ago that I wasn’t going to allow sickle cell to become a limiting factor in my life. I have, however, needed to make some ….err, we’ll call them adjustments. I originally intended to pursue a joint M.D.Ph.D. degree. After the long sickness, mentioned previously, I decided that it was probably in my best interest to take things a bit more slowly. I made the decision to approach the two degrees sequentially instead of simultaneously. I enrolled in a Ph.D. program that would allow me perform sickle cell research and I decided that once I finished with that degree if I still desired to obtain a medical degree then, and only then, would I apply to medical school. I’m in the last stage of the Ph.D. now and I still want a medical degree so I guess MCATs here I come. I do have to admit though that I have spent so much time chasing my career goals and taking care of my health that I have let the social life fall by the wayside. This is definitely an area that I am working on.
What is your medication regimen?
I am currently taking Hydroxyurea, Exjade and Folic acid. I also take Naproxen as well as Hydrocodone (Lortab) as needed for pain.
How do you cope with falling sick and still keep your job?
This is such a fantastic question and is a major problem in our community. I have been blessed to find a supervisor that is very understanding and has allowed me to work unconventional hours to make up for missed time. Not everyone has been as understanding and even those that are have their limits. As a student it hasn’t been as much of a problem because you can read a book, memorize disease pathologies, write papers and study for exams in a hospital bed. Currently my graduate research status affords me with the leisure to work when I can and rest when I need to. I am concerned about what the next stage of life will bring and am praying that God will show me the path to take to handle this upcoming challenge.
I am sure that with God and the motivation you have, you will find a way to accomplish all your goals and work despite sickle cell! What inspires and motivates you the most?
I am inspired by the other sickle cell warriors in the world who go through the daily challenges of living with sickle cell disease and still manage to find a way to make it work. I am inspired by the mothers that take excellent care of their children while dealing with swollen knees and compromised lungs; by the children that are released from the hospital one day and are in class taking their spelling test the next; by the spouses that may not have sickle cell, but experience every pain and make every sacrifice to be supportive and make their relationships work. The knowledge that there are many of us, that we cope, often in silence, but press forward anyway inspires to me to continue on my journey, to take one day and a time and continue on my quest to understand sickle cell, because who knows, maybe the research that leads to a viable and permanent cure for sickle cell may very well be mine.
Is there anything else that you would like to share with the SCD community?
I would like to encourage the SC community to chase your dreams. It might take us a little longer than most and out path might be a bit different, but we are capable of doing ANYTHING that we set our minds to.
“For I know the plans that I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you
hope and a future” –Jeremiah 29:11.
Thank you Lakiea:)