I was diagnosed with sickle cell disease (SCD) at the age of 2, I’m 31 now. I am able to cope with sickle cell through God’s blessings, the love and care I receive from my family, and my medications, which I must admit that I’m not fully adherent to. School was not so bad because at an early age, I understood my condition and limited strenuous activities and sports. With regard to school, I did not have too much difficulty, I even went to a boarding school. In college, I tried as much as possible to limit stress by studying at short lengths everyday, never getting overwhelmed or leaving things to last minute.
Being a sickly child, I wanted to do something to help my plight as well as others, so I had the general sense of wanting to become a “carer.” In addition to being sickly, being exposed to medications at a young age made me wonder how medications “fixed” people. I guess my Mum got a hint of my interests and bolstered them by telling me about the people who knew everything about medications and how their knowledge “fixed” people. So from the age of six, I know because I remember that conversation we had over dinner at the dining table vividly, I knew I wanted to become a Pharmacist. Once I made that decision, my parents did not whisper other options in my ears, even though non of them was in healthcare (both retired and still going strong). I’m thankful for that. In addition to being a Pharmacist, I’m also a health economics and outcomes researcher. A health economist is one who studies the economics of health in order to find ways of reducing the cost of health care. An outcomes researcher is one who uses quantitative and qualitative research methods to understand how various health statuses, including medications affect patients health/outcomes and quality of life. I dedicate most of my time to outcomes research now though and volunteer as a Pharmacist.
To become a Pharmacist one has to, depending on which country, study pharmacy in a college as a first degree, or as a second degree. In the US it is a second degree. To specialize in health economics and outcomes research, a postgraduate degree in a health outcomes-related program e.g. pharmacy administration, social and administrative pharmacy or other health services research program is required.
Sickle cell has not had a negative impact on my career. Between the ages of 16-18, I noticed that my crises occurred less frequently in comparison to my younger years. Currently, I experience one painful crisis maybe annually, just at the end of summer and that’s it, so I just take some time off then; other than that, I work as hard as any other person. I tell people I have SCD only on a need-to-know basis because I am very competitive and loathe pity from people because of my condition. For anyone with sickle cell who wants to become a Pharmacist/health outcomes researcher, there is nothing stopping you. Don’t let people tell you what you can or can’t do; you know what you can or can’t do. With that being said, I would advise the younger sickle cell patients to take things slow, understand themselves and their condition, and appreciate every effort and advice from family and healthcare providers because they do care. Do not interpret my notion of “not letting people tell you what to do” to mean not listening at all but to know your boundaries when it comes to your health.
Sickle cell has not limited me in any areas of my life because I deny being limited.
Despite the fact that I was diagnosed with avascular necrosis, which causes pain (mostly constant) around the hip joint and a gimpy walk, I don’t consider myself limited. I can still walk but with a slight limp. As a volunteer Pharmacist however, standing for long hours bothers me once in a while so I just get on a high stool and I continue working. I have a cane for times when the pain is a bit unbearable but I do not use any medication for the pain, guess it’s my high threshold for pain.
My current daily regimen is 1 gram of folic acid with lots of fluid. While I was in Nigeria, I was on 1 paludrine (proguanil hydrochloride) daily, in addition to folic acid, for malaria prevention. I also tried Nicosan, and some herbal regimen I get from Nigeria but don’t use regularly. At the onset of painful crises, I take as much water as I can take and a non-steroidal anti-inflammatory drug (NSAID), usually naproxen or diclofenac. If this does not help then I know the crises will run its course for a week or so, so I check into the ER. In the ER I ask for pentazocine (fortwin) IV and some promethazine (for sleep). The physicians can decide on other drugs/fluids but I emphasize that I do not want the opioids (morphine) because they constipate and often worsen an abdominal crises. Fortwin which has some narcotic effects, similar to opioids, works by also blocking some of the opioid effects so it’s not so bad for me.
I’ve been happily married to my beautiful and dotting wife for the past two years without any health issues. We do not have kids yet but it’s by design. I was in grad school the first year of marriage and we are just finally settling down. My wife knew I had SCD before we started dating as we were close friends, so she knew what she would be getting into, coupled with the fact that I’m an only boy . Anyways, for previous relationships, I always made it a point to tell them upfront because I always wanted to know their genotype. If they were not AA, we ended things amicably.
That’s about it for my SCD experience. Thank you for letting me share my story.
Interview with a Medical Doctor with Sickle Cell Disease