Monthly Archives: September 2013

HelIuurrr fam!

ImageMiss y’all so much. I have been unwell. Nursing a vaso-occlusive crisis now. Maximum pain in my right arm. In times like this, I really wish I was ambidextrous. I’ll tell you all about it when I am better. Do pray for me. Oh am gonna go ham on you guys when I’m better. Pain has an interesting way of bringing out my creative juices in ways I didn’t even know existed.

Love,

Sefakor-Enam

I LIKE YOUR STRUCTURE!

Excuse me miss. I like your structure. Can we be friends? No kidding, a guy actually walked up to me with that. Now, if that was an attempt at a pick up line, all I can say is, weak! Seriously dude? I like your structure? Can we be friends?  So, I just looked at him with a straight face, said no thank-you, and walked away. Thinking back, how did I manage to keep a straight face saying that? Oh and he was with a friend. I know! I just can’t help it sometimes.  Poor guy, of course he liked my structure, hell, I love my structure!

LOLS! Of course I like my structure. Pretend modelling and things. T-shirt and jeans style.

There is this thing that keeps happening though. Often, when I mention to people that I have sickle cell disease, the response is, you don’t look like a ‘sickler’. Two things here, I don’t know whether that is meant to be a compliment of some kind, but really is it? How do ‘sicklers’ look? Then there is, who are ‘sicklers’? We are people living with sickle cell disease. I really don’t mind what people choose to call me, but for Africans and African-Americans. What do you think about being called a nigger? This really is how strongly some people living with sickle cell feel about being called ‘sicklers’. You need to know this. Not all black people take issue with being called niggers, but you really don’t want to call the wrong black person a nigger.

People have a perception of how persons living with sickle cell should look. In one word, sickly! If you “ain’t  got the look you probably don’t have the disease” . Stereotypes! I hate them! People can be sick and not look sickly because they take good care of themselves or because of the stage of the disease, or because of access to medication, health care services and a million other reasons. You need to remember that! I for one, am anything but sickly. A good number of people living with sickle cell really do not look sickly.  Absurd as this may sound, I actually got discriminated against because I didn’t have the look. I guess I did not sell it well enough. I get punished for having a disease, and I also get punished for not looking like I have it. What do you people want from me/us? Did you cringe, there, ’ you people’? Put that there for effect, no one likes being called names, or being stereotyped. You know, being called a ‘sickler’? Same thing.

So in high school, it is common knowledge that juniors do most of the work. I really didn’t mind. I always had chores at home, within limits of my health of course. Some things are just common sense. In school, I presented my health report, to keep the authorities in the loop, keep me safe, just the general stuff. Only problem, I did not look the part. I could not sell it well enough. So a senior, one of those who are not ashamed to display their ignorance, tells me I don’t look like a sickler and gives me a plot to work on daily. Sweeping? No problem! Except, for about a month, I kept falling sick, back to back. Would be in the ER for three days, get discharged, go back to school and be back in the ER the next week. Thus, the assigned work was not being done. I guess I finally sold the ‘sickler thing’. I was relieved of my duties.  I really did not mind sweeping, but apparently, I could have been excused from the work. I think it makes sense. If a student is sick and spending a lot of time outside the classroom, in the hospital, I don’t see anything wrong with giving them a break in some areas. Just so they can have a fair playing field. The issue here is with the stereotype.

A colleague of mine, she really was bone thin, (damn, I wish I had her body, except, with my height I will look anorexic, so, I guess am ok with my weight). Anyway, so, on asking around, I found out she did not have sickle cell. Maybe she had some other condition that no one knew about. But somehow, she was excused from all duties, even got to use the seniors’ showers which were within the dormitory, while I had to use the juniors’ showers, which were about 100metres form the dormitory.  This, at 4:30am, in a school that was not willing to provide warm water. Yeah! Thank God for that one house mistress who offered to provide me hot water daily.  Why? Am guessing it was probably because I did not look like a ‘sickler’! They could not believe I had sickle cell disease, despite my health report. Wow! What did they want? An autopsy report saying died of… secondary to sickle cell disease?  Side note; the colleague I mentioned, is now strutting her stuff on TV and in movies. She is just a thin person, making use of her lovely structure. Apparently her look was more “sickle cell appropriate” while mine wasn’t.

Now really, is there any justification for this stereotype? Any merit for the prejudice? In the medical profession, the appearance of a patient provides vital information. Priceless information you can get within seconds of meeting your patient as opposed to lab results that can take days and sometimes weeks to get to you. Life saving knowledge. The kind of stuff you want your doctor to know in its entirety and not just in bits and pieces.  Persons living with different diseases have peculiar habitus –[general appearance, physical state, posture of a patient] in relation to the disease condition. This is true for sickle cell disease as well. There are a lot of scholarly articles online that seek to give reasons for these. Do make time to read them, you will find them insightful.

Typically, patients living with sickle cell disease are described as being small for age. This is generally true. The human body adapts, does what it can to survive. For a baby who is mostly unwell, unable to maintain a healthy appetite and has a body constantly fighting off infections, it is not surprising that they will be unable to meet developmental milestones. It is just simple science. Some studies have it that, the small stature may be due to infarcts at the epiphysis of the bone. Simply, the part of bones that enables us to grow taller gets blocked and the cells die because of the presence of sickle cells. Thus, the growth process cannot occur in its entirety, these children cannot attain their actual height.  And as I already mentioned, it is really difficult to put on weight when you are constantly unwell. Little wonder they are small for age.

At the opposite end of the spectrum however, are the very tall ones. Some of my friends try to attribute my height to sickle cell. I say, it is just my dad’s good genes. They don’t seem to buy it; they want to give sickle cell credit for this too. I am not having any of that. So this is what we will go with, a couple of elves came to my room when I was a kid and stretched my limbs, made me taller. That is a reasonable compromise, don’t you say? Some studies have it that, the tall stature may also be as a result of the body trying to adapt. Red blood cells are formed in the bone marrow of long and flat bones. In the child, before the epiphyses fuse, these bones continue to elongate. In a person whose red cells are not functioning effectively and thus being broken down at a faster rate than normal i.e. in sickle cell disease. The body does what it knows to do best. Keep things in equilibrium, increase production. Remember, production occurs in the bone marrow of these bones, thus they elongate faster to enlarge the area for production of the red blood cells. As you know, weight is a function of genetics and environmental factors, thus the super tall may be super skinny in addition, be of average or above average weight.

Gnatopathy-[forward protrusion of the maxilla (upper jaw bone)] and frontal bossing- [protrusion of the middle part of the face] are some of the orofacial manifestations of sickle cell disease.

Jaundice is also a common presentation in sickle cell disease. Yellowing of mucous membranes such as the sclera-[The white part of the eye]. In sickle cell disease this is due to increased breakdown of those sickle cells.

So there is actually some validity to common expectations of how people living with sickle cell disease should look. There are a few more I could add but those wonder into the realms of the ridiculous, so I’ll rather not wade into those waters today. Thing is, even in medical circles, our habitus, is basically two extremes with normal looking persons living with sickle cell in-between. It is just a simple Gaussian distribution, like most things in life. We don’t all have gnathopathy, but if a doctor notices it in combination with other features that is vital information. We are not all jaundiced, at least not always, and there are a people with jaundice from other causes apart from haemolysis due to sickle cell. Even for doctors it gets tricky sometimes. It is certainly unnecessary for everyday life. No need for the sickle cell profiling. It is just unnecessary. Maybe you can take my word for it when I say I have sickle cell disease and not expect me to put up a show for you. That will be very helpful. Thank you.

I’ll love to know what you think about this post. Thanx

Regards,

Sefakor-Enam

DEEP THOUGHTS! WEIRD THOUGHTS!!!

SICKLE LIFE

It is September, sickle cell awareness month. Yey! We get a whole month! If only we could affect policy, change mindsets and such.  We all do our bit, to brighten the corner where we are.  I have been doing a bit on social media, retweeting and sharing other people’s stories. It is quite refreshing, all the information available to anyone who will spend just a little time to read. I especially like all the stories about strong black women living with sickle cell disease, having successful carriers and families. Sickle cell is really not all gloomy. You just have to look to see that a good number of us live relatively normal lives despite all the challenges.

I was all excited about sickle cell awareness month, then out of nowhere, tragedy struck. I was hit with some sad news. I read about the death of a 4th year university…

View original post 1,581 more words

DEEP THOUGHTS! WEIRD THOUGHTS!!!

Image

Hmmm. so much to think about. If we would all play our part to be the change we want to see. The things that bother me. #sickkids #preventableillness #preventabledeaths

It is September, sickle cell awareness month. Yey! We get a whole month! If only we could affect policy, change mindsets and such.  We all do our bit, to brighten the corner where we are.  I have been doing a bit on social media, retweeting and sharing other people’s stories. It is quite refreshing, all the information available to anyone who will spend just a little time to read. I especially like all the stories about strong black women living with sickle cell disease, having successful carriers and families. Sickle cell is really not all gloomy. You just have to look to see that a good number of us live relatively normal lives despite all the challenges.

I was all excited about sickle cell awareness month, then out of nowhere, tragedy struck. I was hit with some sad news. I read about the death of a 4th year university student. She was just a month to graduation. I carried out a little research, and turns out this lady was actually someone I attended elementary school with. She was a year ahead of me. On further investigating, I found out she passed suddenly after a short sickle cell crisis. Yeah, it does that, sometimes. I tried to get confirmation on this.  I really had no memory of her. I resorted to facebook, and it was evident her death was sudden. No condolences, nothing. She had actually recently updated her profile picture. Now, what struck me, going through her pictures; that could have been me! I am sure most people had no idea she had sickle cell disease. She didn’t have the typical look, but wait, what is the typical look?  That is a discussion for another day. She could have been some 90 or 100 kilos, full of life, fashionable, and suddenly she was dead. A month to graduation!!!

Of course, my condolences to her family, friends, loved ones, everyone who she was dear to. I can only imagine the anguish her parents must be feeling. A child, seen through all those years of life, education and just a month to graduation passes on. Sad! Then there is me, only child of my mother, father’s last child, medical student, big hopes and aspirations…Oh! Lord, spare me. I pray for long life and health. This is just one of the things we have to deal with, living with sickle cell. So much uncertainty!  Every time I hear of another sickle cell related death, I’m  shaken a bit. But hey, we will all die someday; let’s consider where we will spend eternity. Honestly though, tell me, when you hear a young person died suddenly, what do you think of? For me, first, road traffic accident, second, sickle cell. Definitely sickle cell.

A while back, a friend recounted her mom’s anger at another lady who had recently lost her son due to sickle cell disease. The boy was probably 10 years when he passed. As the mom of the deceased wailed uncontrollably, my friend’s mom was simply incensed. To her, this mother, was at fault. She caused her son’s demise. Subjected him to a life of disease and pain and ultimately death at a young age. I couldn’t understand why anyone will take such a stance. This mother needed sympathy not condemnation.  Especially not at that time.

While at home, during my current Va-K-Tion, my mom and I had a chat. You know those mother-daughter conversations that daughters generally hate?  Yeah!  Suffice it to say, I am not having one of those ever again!  So, we eventually got into a conversation about sickle cell, and my future. Her grand kids.  mmhmm.  Apparently, being the fussy person that she is, oh yeah, for those who know me, I truly am my mother’s daughter.  Quite fussy myself. Knowing her haemoglobin genotype, she actually took my dad to get tested. Story has it that, everyone, ‘by the way, they already knew her, my mom is quite a popular person’ said she was too fussy. She should let it go. My dad was too well looking and handsome ‘he really is, no bias’ and healthy and such, to have the disease or trait. Yes, so they didn’t test. Then what do you know, I am six months old, falling sick a lot, pain in my fingers (that would be sickle cell dactylitis (hand-foot syndrome) [-extreme pain involving the hands and feet due to a block in blood circulation. Often the first symptom of sickle cell in babies.] Detailed family history, labs, the works, this would later prove that I have sickle cell disease. Thus the journey begun.

I was shocked, to say the least.  Really mom!  No really, am I the only one thinking SERIOUSLY?  Like for real? Don’t get me wrong. Of course I love my parents. They’ve given me more than most, ensured I live as close to normal a life as possible. But, since normal is relative, I’ll say I have a pretty good life. I still got to ask, seriously? I could not believe what my mom was telling me. So here is the thing, my mom, is a nurse. A good one at that. She is smart, learns really fast, my dad, also a smart guy. So now, two educated people with adequate knowledge actually set out to get tested but didn’t?  OK, so it was 1990, there wasn’t as much information blah blah blah, but my mom? She really knew better.

So will someone be right to be upset with my mom, if I happen to die young, just like the young lady I recently found out about, or that 10 year old boy? Well given this story I think they would. I now have a fair understanding of my friend’s mom’s reaction. I understand her, but really is there any justification for her reaction? My mom has done a lot to keep me healthy and I am the best judge of this.  So, hear this, ‘AINT NOBODY GOT THE RIGHT TO BE PISSED OFF AT MY MOM FOR ME OR WITH ME. I AINT ASKING FOR IT. I DON’T NEED IT. IF I WERE TO DIE YOUNG, WHAT MY MOM WILL NEED FROM YOU IS LOVE AND SUPPORT NOT JUDGEMENT. LET HIM WHO HAS NO “SIN” CAST THE FIRST STONE!’

The issue here is this; there are some kids who hate their parents, for well, this genetic gift. I can’t say I am pleased. I am certainly pissed, but, I don’t know, it is still unsettling to have someone judge a grieving mother.  Also, the love is definitely far more than the anger. My parents went all out for me. What if they couldn’t afford to keep me healthy? What if they could not pay for expensive schools, extra tuition to ensure I did not fall behind in school work even though I was hospitalized quite a bit? What if they couldn’t afford all the hospital bills and medication and expensive medical tests? Did not have adequate medical knowledge and access to provide the quality of life that I have? What if like others with sickle cell, it was viewed as a disability, an obstacle and prevented me from aiming high and making giant strides in my life? What if it was all sickness, and my parents weren’t supportive, will I feel the same way?

It is a tricky place to be as a child. Hate/ love for your parent. It is real though. There have been times, where in extreme pain, on admission I felt resentment for my parents, despite all their efforts. I hope sometime in the future, your child does not end up in a similar situation, especially at young age. They could just break your heart.  You know how younger kids are brutally honest. He could just tell you, mom, I hate you for making me sick. Especially so, if you do not have the finances, support system  and adequate knowledge required to enable your child, living with sickle cell to have a relatively healthy life.

Thing is, we all have different stories, you cannot be armed with information and decide to do nothing.  For those who are ignorant, they may be excused by some, but come on! We are in 2013. Ignorance stopped being an excuse a very long time ago. There is so much information out there. Saying you had no knowledge and thus subjecting your child to illness is unpardonable. There are options now. If you think you love that person too much to let them go. Well, find money for in-vitro fertilization (IVF) with genetic selection, or for a bone marrow transplant, or whatever else, and oh, these are some expensive stuff, no cheaper than the health, financial and emotional cost of raising a child living with sickle cell disease. Brace yourselves!  And, for those who want to PRAY AWAY the sickle cell, marry someone you have a high probability of having a child with the disease with, and have ‘faith’ that they won’t get the disease. Here is a quote a pastor once shared relating to issues concerning sickle cell disease, trait and marriage.” What I can do by intelligence, I don’t expect God to do by miracles…” (Of course this is open to varied interpretations)

Again, I love love love my parents.  Am grateful they have helped me get this far in life. For those who  think I am being critical, remember in the scenario I am the dead one. ‘aint nobody wanna be dead’ I got stuff to do. So help me GOD, I am going to live a long healthy life, and when am done with everything I have been called to do, by all means, I will rest in peace. As I said, we’ll all die. Honesty is good. It is sickle cell awareness month. A different perspective is always refreshing.

Again my condolences to the loved ones of the young lady who recently passed due to sickle cell. Please don’t judge parents of kids living with sickle cell, especially in their time of grief. I try not to. And please don’t judge people living with sickle cell. We need all the support we can get. Our parents need your support too. But for real, get information, get tested and do what is right, for you, your children, your family, lets even add on generations yet unborn.

DEUCES.

YOUR SICKLE CELL THINGS!!!

Point has to be made again!

SICKLE LIFE

Excuse you! What? No really? WHAT! MY SICKLE CELL THINGS? Breathe girl! Where do I start from? Tabula rasa!

Hmm! Burying your head in the sand. Do ostriches really do that? Like for real, you have a problem, or more accurately a challenge and you pretend it doesn’t exist. Or even worse, pretend to solve it by full on picking the challenge and dumping it somewhere else? Or as they say, sweep it under a carpet? Really? People do that? Why? I can’t get it. There is this simple thing called, taking the bull by its horns and dealing with whatever issues you have like an adult.

I am not one to indulge in cowardice. Certainly not one to avoid a problem. I like to tackle it head on.  So, now, my sickle cell things. Really? Sorry! Will that be the passion that has driven me to beat absurd odds…

View original post 449 more words

MILLION DOLLAR QUESTION 1A

ImageHa! So a while back, I asked if you will date/ marry a person living with sickle cell disease, assuming you were AA, ie, did not have the disease or trait?

The responses were as diverse as the different haemoglobin genotypes in sickle cell. So there were those who didn’t mind at all. Mostly my medical school colleagues.  I found that interesting. They know more about sickle cell than the average person. They know all the adverse health effects and still don’t mind. Wow! Case in point, this guy William, he is actually AA, his girlfriend has sickle cell disease, he really doesn’t mind. His final year project was sickle cell related. Wow! That is one blessed lady.

Then, there was the absolutely not! This, from a person, who like myself has sickle cell disease. Her point? Well, having lived the sickle life, much as this decision will not result in offspring with sickle cell disease, just the trait. She still wasn’t having it. Her grandchildren, yet unborn, were her focus. No, her own children will not have the disease, but, since they will be bearers of the trait, their children could. This responder was just not willing to subject her future grandchildren to the pain she has borne. Wow! How altruistic! My issue with this is? By this, is that to say people with sickle cell disease should not bear children?  At best this children will have the trait and at worst, the disease. Either ways, generations down the line may be affected. So what now? Survival of the fittest? Lets prevent them from breeding so the whole sickle cell disease thing can be done away with? Hmm

Then there are those who think; what sickle cell? ‘YOU PEOPLE’ fuss too much. Let us be already. People with sickle cell are just like everyone else. They are not sick. They just like to play victim. Of course I’ll date the person, hell I’ll date anyone I want. They act like there is nothing wrong. Expect their partner to do everything like everyone else. Except, when things get real, when the person starts having vaso-occlusive crises, or has several hospitalizations or much later when they get married and their kids have the disease too and start suffering. They flee. Because they were in denial from the very beginning.

This is the thing, being a person living with sickle cell, I would love someone who is AA to date me, will love to have it end in marriage. ‘I ain’t gonna settle for just anyone cus they are AA. U gots to be a complete package.’ I need someone who accepts me for who I am, understands that I am not like everyone else. I strive to live normally, but there are bad days. Pain may be bad sometimes, I may have a limp occasionally, but that doesn’t define me. There are times when it seems like am not taking care of myself, not taking my drugs, missing appointments and such. What I need then, is support, not judgment. Love and care. I need a person who can love me enough to be with me when am in excruciating pain and on admission, when I have doctors sticking a thousand needles into me. I need a person who can be strong for me. And not be scared about seeing me in pain. I need a person who can understand my fears about the future. My health, kids, and such, and not sweep all things sickle cell under a giant carpet. If you can’t handle that, beat it!

So, would I date a person who has sickle if I was AA? Definitely. Why? For one, human. We are all human irrespective of whatever disease.  I get it.  Do you? Can you? The thing is, to know this the first stage is knowing your own genotype. Get your heamoglobin electrophoresis test done.  The discussion is different if you are a carrier (AS, AC…) or have the disease (SS, SC…). Other things come into play. The first stage though, is getting the test done.

Actions really do speak louder than words, the real issues start when your partner with sickle cell gets sick. Just be strong for them. Show all the love you can. If you cannot though, you are better of letting the person be, than being an additional stress in their life, because as you know, stress is one of the greatest things that precipitates crisis in people with sickle cell.

Regards,

Sefakor-Enam.

YOUR SICKLE CELL THINGS!!!

Excuse you! What? No really? WHAT! MY SICKLE CELL THINGS? Breathe girl! Where do I start from? Tabula rasa!

Hmm! Burying your head in the sand. Do ostriches really do that? Like for real, you have a problem, or more accurately a challenge and you pretend it doesn’t exist. Or even worse, pretend to solve it by full on picking the challenge and dumping it somewhere else? Or as they say, sweep it under a carpet? Really? People do that? Why? I can’t get it. There is this simple thing called, taking the bull by its horns and dealing with whatever issues you have like an adult.

I am not one to indulge in cowardice. Certainly not one to avoid a problem. I like to tackle it head on.  So, now, my sickle cell things. Really? Sorry! Will that be the passion that has driven me to beat absurd odds to make it to medical school? Or drive that motivated me to want to be a haematologist, so I can specifically manage others living with this disease?

My sickle cell things! Is that my interest in telling others about sickle cell disease? My interest in trying to prevent the spread of a disease so easily preventable yet an absurd number of children are still born with it annually? My interest in sharing my medical knowledge about sickle cell disease and how to stay healthy with it? Or simply the fact that I am letting others know that all people with sickle cell are not sickly, we can be healthy, and achieve great heights, as evidenced by myself and others doing a lot of great things and not allowing this disease to weigh us down?

My sickle cell things, is that the fact that as a young person, I have decided to stand for something and not just sit around watching movies all day or partying? Or use medical school as an excuse to do nothing but study all day, but rather take on a social project?  Are those my sickle cell things?

Would that be the fact that you are ok with doctors preventing me from doing everything I consider  fun because of AVN. Preventing me from a million things since childhood because I have sickle cell disease?  But when I give myself a break from other stuff you say I am making excuses? Do I need to school you in anatomy and physiology and plain old common sense? Jeez!

It is always said of critics, that mostly, they do not read the stuff they criticize. Case in point. The very suggestions you make, are the exact things I am already doing.

Now, here are some of my sickle cell things for you. No child deserves to be born with sickle cell because their parents were too scared to do what is right. Or too busy focusing on emotions or finances.  Say, for all those who have safe sex, here is a suggestion, find yourself someone who is HIV positive and have unprotected sex with them. No, u wont? It is too risky? Go, get an electrophoresis to know the risk here, hell no! MY SICKLE CELL THINGS!!! There is lot more where this came from. Misplaced priorities! We might as well not save or invest for our future. Why? It is the future! Tomorrow will worry about itself. When the future comes, the money will appear. AGAIN. Misplaced priorities!

GET YOUR HEAD OUT OF THE SAND AND SMELL YOUR OWN BS. Oh I’m pissed. Sorry folks. Consider this an open letter to whom it may concern.

I‘M OUT!!!

Image