Author Archives: juanbankas

About juanbankas

A unique perspective on the world's commonest and deadliest haemoglobinopathy, Sickle Cell Disease. I write as both a person living with sickle cell disease and a medical doctor. I am on both sides of the stethoscope, literally.

Sesky Eysis. (Sexy Eyes)

Guys and girls, we are so different. Aptly stated, men are from Mars and women, from Venus. No kidding! Anytime I mention what I look at in a guy, my male friends go like, “guuurllll you are just weird.” Apparently, a typical guy has a keen interest in a woman’s well, “back pockets” and that-other-one. Females however, oh it is such a spectrum. Girls be looking at sideburns and toe nails and back to lips and and… There are just so many things different girls are interested in, an instant turn on or put off. Wondering why that date went so well but she didn’t want to see you again? Huh, maybe, just maybe it was the toe nails.

Now me, I am an eye girl. Yeah, quite apart from all the intangibles, I like eyes. I know, eyes? Yes eyes! Now, you are probably wondering, how-the-hell does a person like eyes? Well, let me explain.

It probably has to do with the fact that I happen to be one of those kids who wore those super thick spectacles with the rope behind the neck from a very early age. Oh, I was 7 and absolutely detested my glasses. All I wanted, was to see without them, like the other kids. I just did not understand why I could not see without those truly atrocious spectacles, which by the way made any attempts at sports, an absolute nightmare.

Turns out, I had a refractive error, myopia (that means I am short/near sighted). Very near sighted actually. No prizes for guessing how near sighted I am. Let’s just say, by the WHO classification, I am severely visually impaired. Thankfully my visual impairment is corrected. I happen to have high index, photochromic, anti-reflect lenses. These babies have to be a life saver of sorts. Thanx to them I don’t have to walk around with glasses as thick as the base of coke bottles, and in addition they serve the added role of protecting my eyes from the harsh tropical sun and the migraine inducing glare from all my devices, given that I do stare at screens for very long periods. Oh, and thank God for the whole geek-chic trend, I can still look trendy with my glasses and dress it up.

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Did I hear geek-chic, just me in my contact lenses and yeah my all time favorite spectacles. (Wearing these babies has never been cooler, *wink,

Back track, so, I was in second grade and grossly underperforming. Could have easily been diagnosed with one learning disorder or the other and my life would have followed a totally different course. All it was, I could not see. I could not understand anything in school because I could not see and I was writing a whole lot of jibberish because, you guessed, I could not see anything on the chalk board. So yeah, being about the only seven year old kid wearing ugly glasses and hating them and wishing I could just take them off, you can certainly understand why I was fascinated with eyes. Especially my ‘malfunctioning pair’. For some reason I always found myself staring into people’s eyes and wondering “why me?”

So you see, I am very interested in the eye as the organ of vision, and equally keen on preserving mine. Now to the present day, almost. Three years ago my haematologist, sent me off to see an ophthalmologist, because of frequent ‘eye complaints’ and thus the journey begun. Turns out, just by having sickle cell disease I could lose my vision. I know, it’s absurd! This sickle cell thing keeps cropping up in the weirdest of places. Even worse, being that my genotype is SC, I am at an increased risk of developing SICKLE CELL RETINOPATHY. (Slumps onto desk and screams, *insert expletives*) Ok now that we are calm, let’s get on with it…

Yes, I was in medical school, and somehow, of the many complications of sickle cell disease I had read, this one had simply escaped me. Call it small print. I really was in awe. Anyways, in addition to all the other medical appointments I had to keep, now there were the-painfully-long-and-blurry-vision-inducing biannual routine fundoscopy appointments with the ophthalmologists. Frankly, It was after my rotation in ophthalmology that I fully grasped what sickle cell retinopathy is and it’s life altering consequences, considering so many, even “the enlightened” are unaware of its existence.

So now you are probably wondering WHAT IS SICKLE CELL RETINOPATHY?

Well, retinopathy in general, is damage to the RETINA, (i.e. the “seeing” part of the eye which is located at the back and contains several layers which have nerves and small blood vessels coursing through them. The retina captures light and images so that you can see.)
Retinopathy is caused by several factors which may be acute or may have been occurring gradually over time (chronic).
It is usually seen as an ocular manifestation of systemic diseases such as diabetes, hypertension and of course SICKLE CELL DISEASE, it also occurs in some premature babies and acutely, after eye trauma.

Eye problems caused by the sickle red blood cells can be found in all types of sickle cell disease but are MORE COMMON in older children and adults with HbSC and HbSbetaThalassemia. These eye problems, beyond retinopathy, include cataract, hyphema (bleeding into the front part of the eye), iris infarcts and atrophy.

CAUSES:
The ocular manifestations of sickle cell disease are due to vascular occlusion (blockage of vessels) as occurs in other parts of the body. Sickle red blood cells can get trapped inside the small blood vessels in the retina. This can in turn cause:
1. A decrease in blood flow, leading to damage of the retina which may be permanent.
2. Bleeding in the eye.
– When blood vessels are blocked, the eye makes new vessels to replace the blocked vessels.
– These new vessels are thinner and weaker and may easily bleed.
– The bleeding causes damage to the retina. Bleeding can also cause the retina to become loose from the rest of the eye. This is called RETINAL DETACHMENT

NB. Damage to the retina MAY cause changes in eyesight, which if not treated, may result in BLINDNESS.

Sickle cell retinopathy unlike the typical vaso-occlusive crises most patients have come to be accustomed to may be asymptomatic at the onset. Symptoms generally manifest in later stages, it is thus essential for persons living with sickle cell disease to see an ophthalmologist routinely to prevent the sudden vision loss that occurs in later stages.

When retinopathy becomes worse,symptoms that may occur include:
– Flashes and dark shadows in some parts of your vision (floaters)
– Blurred vision
– Sudden loss of vision
– Pain in the eyes

REMEMBER, you don’t want to wait to start experiencing symptoms before you see your ophthalmologist (because this may indicate advanced disease).

If however your experience changes in your vision, or any of the other symptoms you need to go to the hospital immediately. You may either go to your ophthalmologist (if you have one) or your haematologist (which you should) or to the ER.
Also, changes in vision can occur with a stroke (which people living with sickle cell disease are at increased risk of) so you are a lot safer getting examined by a doctor.

Recently, I had what I thought was a floater so I went to the ophthalmologists. Apparently, it was “nothing.” However, there had been some changes from my last fundoscopy examination. A few golden sun bursts -these are non-proliferative changes in sickle cell retinopathy. Actually, not a surprising find. The consensus, we’ll consider laser photo coagulation therapy later. It is just good information to have. It helps in planning and such.

The fundoscopy examination, is itself brief, eye drops are instilled into the eyes to dilate the pupils.This allows the doctor to see the entire eye better. Honestly, the dilation is the part I detest most. With your eyes closed for God-knows-how-long and, if you happen to be me, times two of that, because my pupils just won’t dilate as expected, you just patiently wait till your eyes are fully dilated so the ophthalmologist can examine your retina.

My tip for routine fundoscopy examination, sunglasses. Nothing like the tropical sun stinging your fully dilated eyes. It feels like the dilated pupils allow every ray of light to go through them, it hurts and is very uncomfortable. Of course with dilated pupils your vision is blurry, it usually clears after about a day, so another tip, don’t schedule your examination for a day you absolutely have to read, eg, the day before an exam. Trust me you’ll be frustrated on two counts, waiting forever for your pupils to dilate and then your inability to read after. I’ve been there. Very unpleasant experience.

Treatment:
Treatment is required if the retina show signs of damage. If caught early, most problems can be treated by the ophthalmologist. Frequent eye examinations will be required as well. Depending on the severity of retinopathy laser treatment can be done and alternatively, surgery after which strict follow up care will need to be adhered to.

Prevention:
(Really is better than cure/treatment) and which I am a staunch believer in is simple.
As stated above, early stages of sickle cell retinopathy do not normally cause changes in eyesight. Prevention of long term complications can be done by ROUTINE FUNDOSCOPY. I.e. getting your eyes checked regularly even if you don’t have symptoms, so that any changes can be picked up early and treatment initiated.

NB.Treatments work better if the eye changes are found early.
Also, tips for maintaining general health in sickle cell disease such as increased daily fluid intake are essential to help keep the sickled cells from sticking together and causing problems.

Retinopathy is just another one of the many complication of sickle cell disease. Please spread the word, pass this on and lets get more people informed about sickle cell disease.

Sickle cell disease is preventable, please make an informed choice.

Regards,
Sefakor-Enam.

WHAT-DO-YOU-KNOW?

Ever wondered what a child living with sickle cell disease thinks or knows about the condition? Well, I recently had the pleasure of attending the paediatric sickle cell clinic. It was an interesting place to be with a lot of knowledge to acquire. I certainly felt at home, with all the children around, although of course, I would rather not have so many children born with the sickle cell disease.

My experience at the paediatric sickle cell clinic was very educative. I actually saw a child with the rare haemoglobin genotype CC which technically is not sickle cell disease although, a haemoglobinopathy in its own right. Also I saw a child with bi-parietal bossing. He actually had bi-parietal, frontal and occipital bossing in addition to severe gnathopathy. Of course, I had read the literature, seen pictures in books, but never in person. And ohh, he also happens to be Hb SS/SD.

Thus, in one visit I had come across people with two rare genotypes which a regular sickling test will not detect. You can understand my emphasis on HB electrophoresis as the test of choice as opposed to sickling tests. The child with HbCC’s parents would have both tested negative for a regular sickling test, so will the HbAD parent of the child with HbSD. Thus, again I say, HB electrophoresis is the test to do, not just a sickling test.

By way of new information, well, I always knew I had an underbite. And for some reason thought it was normal. I just discovered, I do have gnathopathy, all though mild, thank God. Which makes me wonder, why did I have braces as a child? They did not seem to do much. I really could not see any improvement with them. And of course there go my hopes of getting new braces to fix the “remnants of my oro-facial problem.”

So now, what do children living with sickle cell disease thinks of their condition? Well, wait till you meet an 11 year old sickle cell disease patient in 3rd grade (3 years behind in his education because of frequent ill health, hospitalization and absence from school) who wants to be a pilot. Give him a pen and paper and this is what you come up with…

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Transcribed as…
Sickle cell is a disease called Yellow eyes
When I come to reviews they tell me that I should buy Zincovite and Folic Acid.
When I come to hospital they tell me not to eat oily food.
When I am sick and I am vomiting, I should fill a bottle with Water and add ORS (oral rehydration salts)
When I am sick I feel like eating
When I am sick my stomach aches
When I am sick, when I walk a bit, I feel my heart beating fast
When I am sick I shiver
When I am sick I feel like being in school, but my mother does not allow me to go to school
When I am sick I sometimes don’t feel like eating
Long ago when I was sick my head was becoming big
This is what I know about sickle cell disease.

Addressing key points:
1. YELLOW EYES.
In some parts of my country, sickle cell disease is actually referred to as “yellow eyes”, due of course to the fact that jaundice is a prominent feature of sickle cell disease as a result of the constant breakdown of abnormal cells.
It is important to note that, “yellow eyes” is sometimes used as a derogatory expression to tease children living with sickle cell disease.

2. Medication.
As you may be aware, people living with sickle cell disease are expected to be on routine medication.
Commonly Folic acid, which is required in the production of new cells and is generally needed in higher quantities in people with sickle cell disease due to the high cell turnover.
Zinc, in formulations such as Zincovite is essential for stabilizing the red cell membrane and of course VItamin C.
In addition to these are important immunizations and other routine medication prescribed by health care providers to ensure a healthy or rather relatively healthy life for people living with sickle cell disease.

3. Nutrition.
Admittedly, I have not been advised to limit fat intake intake, specifically because of sickle cell disease nor have I heard anyone else give this advice routinely. However, with the increased risk of gallstones formation, I guess dietary fat limitation is in order. However we need to remember that the main reason for the gallstones is actually the increased breakdown of abnormal red blood cells.
Also a balanced diet is certainly useful in maintaining good health.

4. Hydration.
As you might be aware, dehydration is a common cause of crises in sickle cell disease. It is thus important to prevent dehydration at all cost.
People living with sickle cell disease are advised to drink large volumes of water daily to maintain good health.
In situation where the risk of dehydration is high, such as if a person is vomiting or has diarrhea, Oral Rehydration Salts come in handy and when oral fluid intake is not possible, intravenous fluids, to prevent crises.
Note that fluid therapy is a key component of management of sickle cell disease.

5. Pain
Vaso-occlusive crises could occur in any part of the body and could be triggered by just about anything. Heat, cold, stress, dehydration, infection etc. Long bone pain, acute chest syndrome and priapism are common, however, abdominal pain due to mesenteric infarction is also possible.

6. Anaemia
Anaemia is another key feature of sickle cell disease. Symptoms include palpitations, as described by this child as well as easy fatiguabilty, breathlessness on exertion, headaches, dizziness and poor concentration.
These are common complaints of most people living with sickle cell disease.

7. Infections
Febrile illness are common in sickle cell disease, mostly due to the lowered immunity. Infections in turn easily precipitate crises and lead to long periods of hospitalization. In the tropics, malaria is more common and severe in people living with sickle cell disease, thus extra effort is required in its prevention such as the use of insecticide treated bed nets.

8.Absenteeism
This must have been a complaint of every child living with sickle cell disease at some point in their lives.
As I mentioned earlier, this kid is 3 years behind his colleagues due to constant ill health and hospitalizations.
This of course is one of the social complications of living with chronic medical conditions such as sickle cell.

9. Anorexia
I can certainly identify with this. Pain has an uncanny way of robbing you of the desire to eat or do anything else for that matter. When you don’t feel like eating when you are sick, and happen to be sick more days than not, this can only have a negative impact on your health and well being.

10. “My head was becoming big.”
This was in reference to bossing that had occurred during infancy, which his mom probably told him about. Frontal bossing as well as gnathopathy are some of the facial featuers observed in people living with sickle cell disease and for which a lot of children are teased.

This is what one kid living with sickle cell cell disease knows about it. please spend some time finding out what people living with sickle cell disease think/ know about the condition. It just might help you in coming to an informed decision about having a child with sickle cell disease.

Then of course, there is you. What do you know about sickle cell?
What does your partner know about sickle cell disease?
What do your friends, neighbors, family know about sickle cell disease?
This might be your chance to educate someone, please spread the word, share this post, tell someone about sickle cell disease.
Remember, SEPTEMBER is sickle cell AWARENESS month.

Be the change you want to see guys.
Peace,
Sefakor-Enam.

(Special thanks to my colleague Edem for this idea and this kid and his mom for giving me permission to share this information.)

WORLD SICKLE CELL DAY 2014

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Do you have sickle cell disease or know someone living with the disease?
Do you know about stigmatization of persons living with sickle cell disease?
Do you know your haemoglobin genotype?
What are you doing with this information, if you do?
If you don’t, why not?

It is world sickle cell day 2014, join us create awareness. Tell a friend about sickle cell today. Read up about sickle cell online, attend a public lecture or join in any of the WORLD SICKLE CELL DAY EVENTS in your area.

Do get tested too. Know your genotype and make an informed life choice.

Regards,
Sefakor_Enam.

Par Orchids!!!

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When it rains it pours. Isn’t that what they say? A few days ago I woke up with my orchids blooming. My high quality, incomparably beautiful orchids were blooming. What orchids you ask? Yeah, what orchids?

PAROTIDS! Those salivary glands at the angle of the jaw through which the facial nerve and it’s branches course. Remember TO ZINZIBA BY MOTOR CAR? Oh how I hated anatomy. Anyways, my parotids were swollen, I could barely open my mouth, and of course, the pain. Oh the pain, and in a flash, everything that could go wrong came to me. My parotids were inflamed, but why? Even more importantly, CAN A GIRL NOT HAVE A DAY OF PEACE??? AAARRRRGGGHHH!!!!

Typical of a medical student I went for the worst possible cause. Chronic liver disease. Chr…whaaat? “But of course” Ok typical medical student, once we are taught something,trust, we will diagnose it in someone, most likely ourselves first. I wonder how many people auscultated murmurs in themselves after we had lectures on them.There was a time pretty much all of us thought we had obsessive compulsive disease, yes, after the lecture. It’s just a thing.

So, back to the orchids, it could only be chronic liver disease. Then it hit me, guurllll, you are being ridiculous, what happened to mumps and all the other causes of acute parotitis, especially so, when you have been battling a sore throat all week. Chill. Ok, ok, get dressed go see a doctor. Someone to make an objective diagnosis because this is not helping.

Then I had my bath, but I did. Errrmmmm, shall we focus on the medicine and not my goat milk shower gel (wink*) or the fact that I was naked. Stop pretending, y’all shower naked too. Ok so since I was in the shower, why not undertake a full physical exam? Oh I went ninja mode stigmata of chronic liver disease.

Turns out I do not have palmar erythema or spider naevaei. No caput medussa , now that would have been a cool find, would have taken a selfie AFTER I GOT DRESSED to show my caput medussa. What else is there to find in chronic liver disease? Jaundice, naah. Gynaecomastea, well, ermmm, female, boobs! No clubbing ( oh not your regular clubbing) Ok so there was some abdominal pain in the hypochondrium. Oh wait, wrong side, left, that’s just my spleen, unless…? Naah

Ok, so it’s not chronic liver. Obviously! But who thought it was. Not me. (Looks away with innocent face*), I do have the enlarged parotids and easy bruising tho. Let’s see what my objective long trusted hematologist says. Am guessing a liver function test is not out of the question. Lord knows my liver and kidneys have been through a hell of lot. Really, all those meds? I hope it is not catching up with me. Damn I’m too young for this. 70 is a cool catch up age.

So I was at the sickle cell clinic. YipeeUUURRRGGGHHHH! My haematologist is the best. Eeerrmm, my labs were deranged, like that is any news. So this parotitis is either bacterial or viral. If viral, mumps, of course it will be the person with sickle cell to get it first, there is no history of contact tho. Talk about immunosupression, alternatively it could be last week’s sore throat gone haywire. Eitherways can’t I just be normal. So, it is not chronic liver disease, as was already established from my thorough THOROUGH clinical examination. (Wink*) So I came home with some antibiotics and analgesics and of course the advice to drink loads of water. For the viral component, you know, TLC! Applications are more than welcome. Specifications, I like dark chocolate. #okbye. From comments on my last post, a back rub never hurt 😉

So the labs, as I expected, a liver function test, clotting profile and blood film comment in addition to those I did at the clinic. I must have mentioned somewhere that this sickle cell thing is expensive! Plus, I missed ward rounds to go to the clinic. Oh I am not going to pretend to be sad about that. It adds up tho, all those missed days, it gets costly. I’m probably going to miss next week too considering the current state of affairs. I love my life! Not!

How am I now? Crappy with a cherry on top. The orchids are still blooming and expanding fast. Temperature is still high, it hurts to eat and I am weak. Lips are cracked because, well, there is only so much water a girl can drink. I am just hoping I don’t develop a VOC this weekend and end up in the ER. I can feel little aches and pains. I wish I could have an IV fluid going so I don’t have a crisis because that is what these infections do, but I can’t just walk into the ER with my pearly whites and request for that, someone will accuse me of being a drug seeker. “And ohh they gon have it, except, I can barely open my mouth and I am too weak for drama.” I am just going to wait this one out!

Do pray for me. Not in the mood for the ER anytime soon. Oh then there is the fact that I missed a gorgeous clothing line launch. This is how a person gets tagged as flakey. Spontaneous bouts of debilitating illness. Hmm. Oh well! This sickle life tho.

Live each day to the fullest guys, make it count. If you are out be safe. Do an extra whatever you are doing for me.

Regards,
Sefakor_Enam.

Addendum:
Spent the whole of yesterday detained at the sickle cell clinic trying to correct dehydration and lethargy from not eating anything in 24 hrs. Fortunately, while on pain meds I was able to eat some rice. Just woke and tried eating again. Ouchhh!!! Guess I may have to go in for for full admission to receive adequate mainten…

Then I was brought to the ER. Was feeling too weak last night, just had to get some glucose in, sips of juice all day certainly wasn’t helping. Working diagnosis now is SIALADENITIS / PAROTITIS.

In other news, some people are just so uncouth. Acting like they are in their own homes while in the hospital. Like seriously, I am trying to sleep here. Plugs ears, covers face, attempts to sleep!!!

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French Leave!

I’ve been away for a while. It’s a myriad of reasons, all good, but I am just going to stick with the big ones.

So I have been unwell, u probably figured that out by now. Well, it has not been the typical crisis kind. Honestly, at this point I’ll much rather have a crisis. MIGRAINES!!! They have been my headache for the past six months or so, literally. It’s a FREAKING STATUS MIGRAINOSUS, well, in my opinion.

Migraines are not new to me. I have had them from as far back as high school, when they were few and far between. In the past two years however, the migraines have increased in intensity, prompting a visit to a neurologist, and of course, subsequent visits, a brain MRI, daily migraine prophylactic medication and in the past two months migraine treament medication.

The migraines have only gotten worse over time, and leave me incapacitated with the associated dizziness, photophopobia, aura and the like. Somehow, I am still supposed to be in school and functioning. It’s so terrible now, my migraine prophylaxis dosage has been doubled, and I am still unwell. I am only functioning at about 30% capacity and even worse I have daily headaches. It is abnormal. Nobody is supposed to have headaches everyday. Really, what is going on? It is amazing I am still able to pass my exams.

Basically, I’ve been so unwell, I barely have enough time for school work and sleep thus it’s been really difficult trying to make time to blog.

In addition to this, my school workload has drastically increased. It has “a little” something to do with the obs and gynae rotation, which by the way I think is a major contributor to the increased rate of migraines.

I would do the research, but with my reduced functioning capacity and increased workload, I really don’t have the time, at least not now. So, I want to know, do you guys suffer migraines too, because I know a number of persons living with sickle cell disease and we all seem to have migraines. Curious, isn’t it?

Other reasons why I have been MIA. Well, logistical issues I really don’t want to discuss because I’ll probably get another migraine just talking about it. Suffice it to say, internet access in my hostel is pretty much non-existent now and typing on my iPad mini is simply uncomfortable, plus I am having challenges with some of the typing settings on the app. Shall I go on?

I am still working on everything. First I need to get rid of the migraines and get back to full functioning capacity then I can add on the seemingly extra-curricular activities. IT IS AMAZING, (ACTUALLY FRUSTRATING). MY COLLEAGUES ARE TRYING TO GET DISTINCTIONS OR CREDITS OR AT LEAST PASS, AND ALL I AM TRYING TO DO IS, NOT GET A FREAKING HEADACHE. JUST THAT. I need to make a judgement call whether to study or sleep when I know I should be studying just so I don’t have a headache later. it’s absurd. This my current EXISTENCE, IT CERTAINLY ISN’T LIVING. Maybe medicinal marijuana should be my next option, WHAT IS THERE TO LOSE, REALLY?

Do let me know how you deal with your migraines because I really need the help. We could all learn.

What’s that I usually say when I get here? Not feeling it today. #peace

Regards,
Sefakor_Enam

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I LIKE YOUR STRUCTURE!

Obstetrics and gynecology got me all kinds of busy. I am going to be reblogging a few of my reader’s favorite posts till I can make some time to type up new material.
Enjoy. Take your time to learn from these because that is the rationale behind my posts and please spread the word, educate someone else.
Regards,
Sefakor-Enam.

SICKLE LIFE

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’…

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A few ways to make the world more awesome: A chat with Kid President

TED Blog

KidPrezBlogHeaderRobby Novak seems like a regular ol’ 11-year-old boy with a big laugh and a tendency to fidget, if you ignore the fact that he’s also a YouTube superstar. The dynamo elementary student started making a series of motivational videos with his older brother-in-law when he was just 9. The videos went viral, and since then, he’s appeared on Today , interviewed people like Beyonce and the President of the United States, and even addressed the crowd at the 50th Anniversary of the March on Washington.

Chances are you’ve seen one of Robby’s videos, though you probably know him as Kid President. As his alter ego Kid President, Robby addresses the masses from his tiny oval office, spreading the word that life should be a party, people should be more awesome, and everyone should “treat everybody like it’s their birthday.” He wears a really snazzy suit and a red…

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PRIAPISM.

Priapism, Corticosteroids, Opisthotonus and LMP (which for all intents and purposes should be Last Menstrual Period, but is apparently not) are some names of teams that make up the (medliga) football league of the University of Ghana Medical School. It left me wondering how team names are chosen and what, if I ever ventured into that business of football club ownership, I would call mine.

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Now, Priapism FC. They go by the mantra, STAND STRONG, HARD and FIRM. Interesting isn’t it? Team priapism, new entrants into the medliga last year, actually ended up league champions. In the words of their coach “It is proof that with hard work and determination you can turn the most dire situation into success” The guys actually stood long, hard and firm. Taking a cue from them, I guess WE ALL NEED SOME PRIAPISM IN OUR LIVES. Eeermm actually, you really do not want to have the medical condition though. U can take my word for it.

I think at this point, a disclaimer is in order. MEDICAL INFORMATION. BRACE YOURSELF!

WHAT IS PRIAPISM?

Priapism is a medical condition in which there is an abnormal, persistent, involuntary, prolonged erection unrelated to sexual stimulation and unrelieved by ejaculation. Simply, the erect penis does not return to the flaccid state despite the absence of both physical and psychological stimulation within 4 hours. Priapism is a MEDICAL EMERGENCY and should be treated as such,

It is categorized as either high-flow or low-flow (which accounts for about 80% of cases). Management is based on this categorization, as both are managed differently. There is a myriad of causes of this condition such as spinal cord trauma ( neurological), enzyme deficiency (G6PD), drugs, malignancies and vascular (haematological-Sickle cell disease and trait, thalassaemia and leukaemia).

Priapism in sickle cell disease is categorised as low-flow priapism. Sickle cell disease accounts for 89% of adult cases of priapism with studies indicating that 42% of adults with sickle disease will develop priapism at some point in their life. In the paediatric age group, 2/3 of cases of priapism are in children with sickle cell disease. Evidently, priapism affects people of all age groups with its peak between the ages of 19 and 21 in patients with sickle cell disease. It obviously affects only men, usually African or African America (even though my reading yielded mention of a female equivalent, clitorism, which is not widely accepted as a true  equivalent).

Without going into much detail, what basically happens is that blood in the penis becomes trapped and unable to drain, leading to, ischaemia, scarring and permanent erectile dysfunction (if not promptly managed). In a person having a sickle cell crisis, just as occurs anywhere else in the body, there is occlusion of vessels, increased blood viscosity, stickiness of sickle cells to the blood vessel walls, depletion of nitric oxide ( a potent vasodilator), hypercoagulabilty of the blood, chronic inflammation and a lot more mechanisms by which  vaso-occlusive crises cause damage. It is thus no wonder that sickle cell disease accounts for a large proportion of cases of priapism and that so many patients suffer this complication.

The key feature of priapism in sickle cell disease is pain, apart from of course an erection lasting more than 4 hours. Immediate medical attention should be sought to prevent occurrence of complications. On reporting to the hospital, labs will be done to determine the levels of all blood cells. This is important in determining the actual cause of the crisis. Blood samples will also have to go through checks to ensure that you get the right blood group because management actually involves a blood transfusion. The doctor will also perform other tests, including angiography if necessary.

General management of priapism involves both medical and surgical interventions. Every patient who suffers priapism will need to see a genitourinary system specialist. In sickle cell disease however specific protocols need to be observed. For one, priapism is a complication of a vaso-occlusive crisis. Thus, the crisis needs to be managed effectively. The doctor will take steps you are probably already familiar with such as adequate hydration, analgesia, alkanization and oxygenation as appropriate.

Next step is an exchange blood transfusion. This would seek to increase your red blood cell level and exchange the sickle cells in your blood for normal cells from the donor blood. After which oral medication can be given. Then the blood needs to come out.  Under local anaesthesia the blood will be aspirated from the penis. This is crucial in reducing the swelling and built up pressure. If these medical options fail to bring relief, medication will have to be injected directly into the penis and if it still proves unsuccessful, a surgical shunt will have to be inserted.

As you have read above, this is complex stuff. Staying at home with priapism, even for persons without sickle cell disease, who may have it as a side effect of medication or due to recreational drug use, really is not a good idea.  The complications as I already mentioned are ischaemia, due to the blood in the penis which can’t drain, thus oxygen cannot be supplied to the tissues as well as impairment to the removal of metabolic waste. Damage to blood vessels, resulting in long term reduction in erectile function (impotence) and in severe cases, gangrene which will result in the penis being surgically removed.

What can we do?

  1. Don’t have sickle cell disease.  Radical as this may sound it has a simple explanation. Since you are more likely to have priapism as a complication of the disease, primary prevention, which I am very passionate about, is simply that you get tested and know your genotype and that of your partner and ensure that your child does not have sickle cell disease. Alternatively, IVF with genetic selection and bone marrow transplants and all the financial and heath implications that come with them need to be considered realistically and appropriate measures taken

2. For the rest of us who happen to already be born with sickle cell disease:

*stay healthy ie. anything to prevent a vaso-occlusive crises

*take your daily meds

*stay hydrated

*stay warm

*go for routine medical checks

*eat right

*avoid stress

*avoid use of recreational drugs

*pay attention to danger signs from your body and take appropriate measures…

Live each day to the fullest, make it count.

Love,

Sefakor-Enam.

(I hope this has been educational. Please like this post, comment and share. Thank you.)

Asking WHY?

The youth are mostly stunted because we failed to develop the skill of analytic thinking.

Throughout childhood many have been beaten as a means of correction instead of the wrong being explained and the right direction given in love.

It is no wonder that later in life, while at work when told to halt a project, one finds it difficult to ask why? Not out of disrespect (as the average Ghanaiain supervisor perceives) but as a way to know what to avoid next time.

It is thus no surprise that the same mistakes are repeated in our institutions. Yet we still wonder about the inefficiency?

Mistakes are a learning tool. Understanding them ensures that we do not repeat them.

“I tried a 100 times and I failed but I learnt a 100 ways how NOT TO do it.”

Sefakor-Enam
#Sicklelife

Post on PRIAPISM out soon.
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2.0.1.4.

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2.0.1.4 BABY!!!! Just tryna look cul for you. This is exactly how I say it tho. Repeat after me 2.0.1.4 BABY!

Fa la la lala lala la la! I know I know, Christmas was a while ago. We are already full throttle into 2.0.1.4. Hope you are having a great time. I really missed you over the holidays, please say you missed me too. I had a bit of a break, had loads of fun and then some. On returning to school there were exams, and everything else that comes after a Christmas break.  Now though, with my schedule back on track let me just say, TWO.ZERO.ONE.FOUR. Baby! Expect loads of great stuff from TEAM sicklelife!

The holidays are great. In the tropics, the dry north-east trade winds of the harmattan can be a bit of a bother. Can’t say I had much to complain about though. Yeah, there were a few aches and pains, but nothing over the top. Thank God! Let me however confess, I was hoping for a bit more cold air, you know, so I could break into my winters’ best. I’m just that girl who is always waiting for the weather to ‘bring itself’ so I can get warm in my scarves and hoodies and blazers and socks and boots, well, still working on the boots though. It is a delicate balance, trying not to overdo the whole ‘keeping warm thing’ while at the same time ensuring that I protect myself adequately from the elements.

The weather is just so unpredictable. Most days I end up warm and uncomfortable by midday when the hot tropical sun finally makes an appearance in full splendour.  Anyways, that is just me.  How was it for you in the temperate regions? I read about all that snow and rain you had to deal with. The weather can really be a bother, I just hope you went out all with the ‘keeping warm thing’ and entered the New Year healthy.

So, this is it. 2.0.1.4. New year. Let me guess. You already have a long list of resolutions. Probably stuff from last year you were not able to achieve. Well, been there, done that. This year however, I’m doing something a little different. No more long lists of things that I am probably not going to be able to remember, much less achieve. I am going with a few general principles to work around.

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Example, LIFE IS TOO SHORT NOT TO GO ON A MOTORBIKE RIDE no matter how weird it looks. #spontaneity!

 Operation 12 months has been going pretty well. It started late last year as some of you are  aware and ‘so far so good’  as Ghanaians like to say. I got some new perspective that I am going to share now. We may not all agree on this, but, what is that they say about opinions? Yeah, let’s just say this is mine. Let me know what you think about it though. I will really appreciate it.  Consider this a brief new years’ message from, moi! (I actually just curtsied, hand movements and all, oh am dramatic!). Here we go.

I have had my faith questioned in the past for saying that I have sickle cell disease. Some people take issue with this. Think of it as an expression of lack of faith in God. Some say that I should not accept the diagnosis or speak openly about it. Well, hear this friends, there are facts and there is truth. Though common definitions have led us to believe that they are one in the same, in reality, they are quite different.

 Fact, obtained through objective empirical means are generally verifiable and reproducible. Simply, they are true. Question: By virtue of being true are fact truths? That may leave you wondering, what then is a truth? Well, a truth actually reflects the true state of an issue (or shall I say a fact). Note that the key word here is state. Truths are highly subjective and temporary.  They differ from person to person based on our belief systems.  The truth is what you believe to be true in the current situation.

Simply, we all live with several facts every day. Say you are feeling unwell and go the hospital, a doctor may serve you a long list of facts based on the knowledge he/she acquired through medical education. The list gets longer as you go through the laboratory and finally the pharmacy. These facts no matter how unfavourable, assuming all parameters are accurate will be reproduced wherever else you go, because they are based on objective empirical work.  After obtaining the facts, what next?

The difference between two people with the same set of facts is information/knowledge. It may be information you obtained by virtue of your religion, field of study, cultural upbringing or whatever else makes us different as people. The information you have determines your beliefs. Thus, the real difference lies in our beliefs. You need to realize that the facts you obtain on any given day, will be translated to a truth in your life based on the information you have fed yourself over time.  While I am at this, I will encourage everyone to read as much as possible, especially material outside their chosen field of study. It is a very key factor in determining the truths in your life.

Practically, two people diagnosed with diabetes, given the same or very similar fact will have different outcomes (truth of the disease in their lives) based on their beliefs. For example how much information each gathers and how serious they consider the conditions and act to mitigate its effects, their spirituality/ faith / religious beliefs are also key determinant of the truth of disease in each person’s life. (Of course, these are subject to varied interpretations far beyond the scope of this blog. Do share your take on this) Socio-cultural circumstances also are important determinants of a persons beliefs and thus could be the difference between a well managed diabetic and one that ends up with retinopathy leading to blindness, peripheral neuropathy leading to limb amputation and everything else that could go wrong in diabetes.I believe what each person believes of the disease is the ultimate determinant of its effect on their life because it determines how they react to their diagnosis and management (compliance).

Fact, I have sickle cell disease. Fact, my immunity is lower than average. Fact, I am often anaemic, tired, or get tired easily. Fact, this and fact that and facts I really don’t want to hear anymore.

Now here is some information I have fed myself with overtime. Drugs actually work. Prevention is better than cure. Health is more pleasant than sickness. God loves me. Faith is the substance of things hoped for and the evidence of things not seen. Before He formed me He knew me and predestined me… This too shall pass…

Now this is the truth by which I live. I am healthy. I am not a sickler. I am not weak. I ain’t got time to be sick and I ain’t sick. I live each day to the fullest and I make each day count.

We all have to live with different facts. The facts, we can’t always help. What we can do, is determine the truths in our lives. Remember, the truth is the true state of an issue and it is determined by our beliefs.

Having said this I need to point out that I do believe the Truth of the salvation that comes from believing in Jesus Christ. The facts of Christianity are the same and all true Christians have the same beliefs thus, a single truth. I do not accept new age philosophy of relativity of truth based on this. Same facts + same beliefs = Single Truth.It is that simple. (Just had to clarify)

Regards,

Sefakor-Enam.