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Meet Hafiz: Pharmacist, Outcomes Researcher, Husband, Warrior

MeHi, I’m Hafiz.

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.

 

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Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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5 Comments

  1. che wilson
    che wilson June 20, 08:46

                       A CRY BY SICKLE CELL ANAEMIA PATIENTS.      I have the most honour and respect to put these my few words,to your Organisation.              Am a Sickle cell Anaemia patient which have being having this illness for 3 decade nowand hope these my informations and innovation will be helpfull also with my reseach i have carried out about this my illness                          There is this drug called  H.M, I and some others Sickle cell anaemia patient have being consuming this drug for long and i did some research about the drug and my illness and i observed the drug  was effective to us  Sickle cell anaemia.                      Also this drug was in cameroon through a charity organisation ,so later the drug became scaresand very expensive  soon later ,it was sold for 15,500 Frs and each parkets contain 90 capsules,which is to be consumedfor a monthly period, and was to be taken daily from when you are dianogned as a sickler ,that is, at the age of 2 years  ,and from that moment you have to be consuming this drug till when death do you part. know presentlythe drug is unavaliable in the market, ie phramacy,hospital etc.Morever i will help you with some Vital information required for it production of the drug and if posble the package of the drug i consumed ,when the drug was in the market……………  the composition of the drug    ,,,,,,various Miligram and percentage of the drug   the proprietory blend of the drug   the directive of the drug   the drug was in capsule form.       Futhermore i will also suggest to you,as done in  my  research that i also notice certain HERBS and componients here in my country that can also rapidly increase the content of  RED BLOOD CELLs, HAEMOGLOBIN ,ETC an  if  being added to modern medication*H.M* as concerned sickle cell anemia ,i do beleived we are going to come out with the best modified  21 century drug for this illment,because both this medications need to be combine together,hence need team work,ideal sharing, etc          In addition i will wish to voluntee as part of your organisation,so as to share my ideals about the illnessand also to exchange,exploit,some ideals which i wrote down in a BROCHUR< i named it Users guide to sicklecell anaemia patient, i will provide the Brochure to you if and only if you will need it.                               Sir ,i and my fellow brother and sisters in Cameroon while not the world atlarge. really wishyou will help us with this drug production and also reducing the price for us,since we can not do withot this drughence it is not easy for us now because the drug can not be found in any pharmacy in cameroom neither inAfrica nor Europ,since the charity was close due to the death  of the REV father  who was running the charity,we are really in a dispaired condition,some dying.and it is one year today we are unable to lay hands on thisdrug hence disturbing our health and keep on going to the hospital day in and out,given us folio acid  yet still having crises frequently ,whereas with H.M ,NO crises,pains, blood stortage.etc     ALSO NO INTERNATIONAL DAY OF SICKLE CELL DIESESE ,why ,why and why,such day will help us to beaware of our self,illness, also have councilling about our illness  and other young couple to know thier Genetic status before getting marriage           So in a nutshel ,i wish your organisation to produces this drug for us sickler and to sell it for us the sicklerat an affortable price. many sickler are dying in the hands of fake Chines drugs, and we also need councillingsicne most sickler are ignorant of this illment, you really need to do something for us sickle cell patients. Childern from 2 years old to 24 years old are mostly affected,and I notice this illmentIs due to lack of mineral in the body system.                                                                                    Thanks for understanding
      your faithfully
          che wilson
    Email;chewilson2003@yahoo.com

  2. Victor
    Victor June 24, 23:18

    It is great to meet a fellow warrior. Hafiz, you inspire millions of sicklers out there. My name is Victor Okech and I am Sickle Cell Warrior, what brings us together is the similar struggles we have to go through as sicklers.

    This should not mean that we are weak or unable, but strong because we are determined. I have never let my disorder stop me and I have always tried to be the best. The only difference I see between us Sickle Cell Warriors and others is the medication we have to take to prevent crises attacks. Otherwise, we are strong, capable, and determined.

    Currently I work for a humanitarian non governmental organization as the Information Technology Manager. You can achieve whatever you want. Viva all Sickle Cell Warriors…

  3. Hafiz
    Hafiz February 04, 07:49

    Hi Che,

    I could not quite understand your comment but I’m guessing you’re trying to reach the people running this organization. I would suggest clicking on the “contact us” link in the SCW home page to drop a comment for them.

    Best Regards.

  4. Hafiz
    Hafiz February 04, 07:51

    Hi Victor,

    Honor to meet you too. I’m glad I’m an inspiration but the truth is you all inspire me.
    Stay strong and be steadfast in your dreams, they’ll soon become reality!

    Best regards,

    Hafiz

  5. Victor
    Victor February 17, 12:46

    Thanks Hafiz, for your reply. I hope you are great. I am okay, just thought I would pass by and say hi to fellow Sickle Cell Warriors. Keep on the fight and remember true strength comes from your heart and will to overcome all obstacles.

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