WORLD SICKLE CELL DAY. 2. MY PLEA

It is about life not death, heath not disease, joy not sadness.                                                   The sickle life is one of many challenges.                                                                                   We however challenge ourselves, using each brick placed in our way,as a stepping stone to greater heights.

This is not an easy life,                                                                                                                       I do not wish these difficulties on anyone, or call it a blessing of any kind.                               For everyday that I am alive, I am grateful.                                                                                      My greatest desire however, is that no one else be born with SICKLE CELL DISEASE.            That no child, be subjected to a disease, so easily preventable.

It’s been said, “that which I can do by intelligence, I do not expect God to do by miracles.” Options exist, education abounds, all you need,is to avail yourself, listen to this plea… Consider the fate of that unborn child when making the choice of who you want to be with.

Remember, the first step in making the informed life choice is knowing your hemoglobin genotype. Please get tested.

WORLD SICKLE CELL DAY. 1.THE UNSUNG HEROES

Our patient, the one with the gastric carcinoma, is he still on admission?… Relax!… Relax…  am okay… I was in the middle of serious business, but somehow, my friend was more concerned with my health. Valid concerns. After all, I hadn’t been in school in a while.

Friend, whom I can call at anytime, when in pain or just feeling down and I know she will drop everything and come to my aid.

That other friend who, while I am on admission, weak and in pain, unable to bathe myself, doesn’t mind bathing me, though I am almost twice her height.

To that friend, who doesn’t mind feeding me, when the positioning of the IV cannula (drip) makes hand movements cumbersome. Or when I have simply lost interest in food, feeds me and ensures that I finish all meals.

That friend, who I call at the oddest of times, when am feeling down. In those moments when my pethidine is wearing off, in excruisiating pain and I  just can’t keep acting strong. I call you and just let it all out. You are there to encourage me, always.

To that friend, who on one occasion being my doctor too, cared for me like I have  never been cared for by any doctor. Insisted on paying for all the labs before they even got to me. My doctor, TLC giver, my friend.

To that friend, I affectionately call my school father, who always checks up on me. Ensures that I can purchase all my medication, even if my parents are not around, and always comes along with the goodie bag.

The friends who visit, keep me company when I am on admission. Try to cheer me up, encourage me. The friends and church family that spend time to pray for me when I am unwell.

Friends who run around, getting food, medication, labs, stuff  from my room etc, because more times than not I have to be rushed to the emergency room without packing anything, and once there, need to rely on others for everything.

To that special someone who insisted on spending entire  days with me while on my last admission. Gave me the best wheel chair ride ever, when I went to have my x-ray taken. Love you hon.

To my parents for inspiring  me through the years, ensuring that sickle cell disease was never an obstacle for me. Doing everything to ensure that I live a normal life irrespective of the many challenges.

All I want to say is, to every single one of you, I am grateful. You play a very vital role in my life. I may not be able to express it with words daily, but I get to see World Sickle Cell Day this year, because of your special role in my life. I dedicate this day, which to many people living with sickle cell disease, is even more important than our biological birthdays  to every single one of you. Your diverse efforts in my life have enabled me go through another year. Though  the challenges were many, thanks to you, I still live each day to the fullest, making  everyday count.

Thank you.

Love,

Sefakor_Enam

WHY DE-BOARDINISE ME? STRUGGLES OF THE SICKLE LIFE.

De-boardinisation! Isn’t that punishment, reserved for the most disobedient, disrespectful, trouble-causing, simply, deviant students?  Punishment meted out after others have failed?  Is this not a decision resorted to only after a person has had several ‘visits’ to the disciplinary committee? Why would a straight A student be lumped up with this group?

This is how it plays out in most senior high schools in Ghana. Somehow, without doing anything wrong, I found myself being asked to leave the boarding house. All it took, the headmistress asking that I invite my parents to her office.

My offense you wonder? I happen to fall sick once too often. Like there was a stipulated number of times each student was allowed to fall sick. Sorry, I didn’t get the memo! Basically, all it took was, me being a person living with sickle cell disease, and like the students who did everything, from stealing to leaving school without permission, I got thrown out of the boarding house.

Apparently, there were too many students and the school was not willing to take ‘the burden of caring for a sick student.’ Notice that I am quoting. That would be my headmistress. She then proceeded to go through a list of students with ‘special needs.’ Turns out, I was just a nuisance she would rather not bother about. Suffice it to say, my mom was in tears at the end of that meeting.

She took her precious little nuisance out of their care. Oh I was incensed. Was ready to fight them but she would rather not,she was really hurting. I was still under 18. Could not have done it on my own, thus, we let it go, and I continued high school as a day student.

I believe determination and focus rather than the school you attend or the course you read,or the challenges you encounter along the way are what determine if you will make something of yourself or not.

Having said that, Sickle cell placed limitations on my choice of high school because my mom wanted me close to ensure that I was healthy, even though I could probably have gone anywhere with my grades. I find it  laughable then, that after settling, they found it within themselves to de-boardinise me. Oh well…

Having gone through all the challenges, missing school and exams. Sickness and hospitalization. After all that, I make it to senior high school, and what do you know? I am not even going to be given a fair playing-field  to make it to university? Seriously?

Give me a reason why they were right to de-boardinise me and I will give you 10, why their reasoning was flawed.

Medicine and science have progressed so much, it is even astonishing what we can achieve now. Yet, someone happens to have sickle cell disease and you treat them so unfairly. We might as well go back to being hunters and gatherers, live in caves. then we can justify our atrocious behavior!

Dedicated to the high school student currently fighting her de-boardinisation for having sickle cell disease. I did not fight  when it was done to me, and several others have suffered the same ordeal. Keep fighting. It starts with you, be the change you want to see in the world.

Constantly Adapting! This is my sickle life. (Part 2)

Aggressive physical therapy! Whatever that means!!! For a sports enthusiast, that is music to my ears. Except, am not allowed to jog or play basketball anymore, because, that will be putting too much weight on my hips. Bummer! So exactly how aggressive can my physiotherapy be?

Seeing the glass half-full tho,I have access to a gymnasium, hopefully at a subsidized cost. All am gonna say is, watch out for my toned abs and butt. Oh, and am allowed to swim. Remember your basic physics? Archimedes’ principle? Upthrust? Yeah, my hip joint stays mobile without having to deal with my body weight. Guess I have a new favorite thing. Except, doesn’t cold water precipitate crises in some people? Isn’t that too much of a risk?

Oh, and still reducing weight load on my hip, no more of those high heels. Well, supposedly. Cut a girl some slack. I ain’t gonna wear heels as often as I do now, obviously. But never say never, right?

Dancing! Yes! Azonto, Amanda, all that, just turned serious health hazards for me. I ain’t even trying to be funny. The point is, am taking steps to reduce the rate of degeneration at my hip joint so that my femoral heads don’t collapse anytime soon, if ever. Its serious business.

The sickle life, is a life of constant adaptation. I don’t know if I can manage this whole reduced physical activity lifestyle, but I am all for doing everything to stay healthy, Because, life really is a lot of fun, and I cannot enjoy it if I am constantly sick. Any suggestions of indoor activities a ‘hyperactive’ person may find interesting?

Lets not make this a pity party. I am fine, can walk okay. Except when I get the pain episodes. I am fortunate enough to have access to best medical personnel and equipment, and blessed with the finances to do the required tests as needed. Others, however are not. I have been diagnosed quite early, steps are being taken to limit the effects. The same cannot be said for most people.

Hopefuly, you know more about avascular necrosis of the femoral head (osteonecrosis) now than when you started reading. Remember, sickle cell disease affects every part of the body. Get tested. Know your status. Is this a disease you will risk passing on to your child? Make an informed decision.

Constantly Adapting! This is my sickle life. (Part 1)

You have sickle cell, you are weak, fragile! You should not partake in any kind of sports. You have probably heard that notion passed around, maybe even agree, I however, strongly disagree.

Being proudly non-conformist, sports is my favorite thing to do. Am the kind of girl who likes to play basketball with guys, jog, because I think it is fun. Weird, right? Who thinks working out is fun? Well, you know those ‘happy substances’ released when you workout, endorphins? I need bucket loads of those. Considering all that I have to deal with, having sickle cell disease compounded by the crazy medical school schedule. Its all about the endorphins. It is a good feeling, you should all try working out.

Then sickle cell strikes again! What do you know? Bilateral avascular necrosis of my femoral heads (osteonecrosis). And am like, really? seriously? bilateral? oh no! basketball! babies! kill me now!                                                                                                                                           In all of us old bone is constantly being replaced by new bone at our joints, but  in sickle cell, because of inadequate blood supply to these joints, the new bone is not formed as quickly as the old is lost. Leading to death and possible breakdown of the bone. (osteonecrosis)

Apparently, jumping exerts at least twice your body weight on your joints when you land. That is a definite no no for me now, and the baby? I am absolutely crazy about those little people. Will cross that bridge when I get there. Now tho, in the orthopedic surgeon’s words, aggressive physiotherapy! Obviously, we weighed our options, we’ll leave surgery for later…

Sickle Life? Really?

HI guys,                                                                                                                                             hope you are all well and staying healthy, living and loving each day for the blessing that it is.

I guess you are wondering, why ‘sickle life’? What is sickle life? Simply, it is my life.The daily struggles living with the sickle cell condition. The ups and downs. Yes, I said ups, because there are many, even though I battle daily with this genetic disorder.

So, who am I? Well, I answer this question everyday that I have breadth. I am African, specifically, from  Ghana, West Africa, but fundamentally, I am human, the one thing that unites us all, and to me, the only description that really matters.

I have been living the sickle life for 23 years, with all its challenges, however, for everyday that I am alive, I am very grateful, for an opportunity to live another day to the fullest. to make it count.

Non-conformist, is another description I use for myself. Simply because, I will rather create a path and walk it alone, than follow others, knowing that, more often than not they have no idea what my peculiar circumstances are.

Driven, passionate, that is who I am.Sickle cell disease may be considered a disability to some, but to me, it is another stepping stone to greater heights.The drive to be better than most, arose from the realization, very early in my life, that sickle cell, is no excuse for failure. Thus for every moment that I am healthy, I go all out to achieve success.

Thus, the brain behind sickle life,23 year old lady, who happens to have sickle cell disease. Life is the focus. Living each day to the fullest, making each day count and certainly not allowing myself to be limited by other peoples perceptions of this disease.

And oh, I also happen to be a fourth year medical student. Saved this for last, because really, it is not my identity. The point here is, my passion and drive, as well as my non-conformist attitude have brought me thus far. If you have sickle cell disease or know anyone with it, you have a fair idea of how much school I have had to miss, examinations I have missed or written in absolute pain, but despite all that, I have made it to medical school and I am thankful. It has been difficult, but I am not one to quit.

All I seek to do, is inform and educate you about Sickle cell disease, in a manner that is easy to understand. share my experiences with you, and ultimately get you to get tested to know your sickle cell status and hemoglobin genotype, so that you can make informed life choices.

Thank-you.