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Saturday, June 18, 2016

#PAIN #CHANCES #DEATH #WSCD2016

In Loving Memory of Muhammad Nura Abdullahi whom I met once and my sister Mona Umar, who both died of sickle cell related complications, may Allah have mercy on their souls and cause the pains and worry they struggled with on earth to be a source of joy in their hereafter. Ameen.

Another June 19th and it's World Sickle Cell Day #WSCD2016 and I'm (probably) alive (written on 14th June, World Blood Donor Day 2016) and I feel so, so very blessed especially after my own very critical episode of a sickle cell related complication that I somehow managed to scale, again and in the words of my very dear friend, Zeeman: "You are really not giving sickle cell chance to take you. You're a fighter!" I am Titanium! Just kidding, it's not my power, I usually have no idea where I am when sickle cell decides to attack in any of its forms. I have been blessed by Allah through my usually awesome medical doctors, the prayers of my parents, friends and loved ones, the thought of my daughter and maybe my will to live, sometimes. This year has been a very tough year and it's not over yet and I really wonder, if I make it till the end, what else will be in store for me?! I know one thing, even though a lot of times it is so hard to remember and believe, no matter what or where or how my next adventure, drama, comedy, sci-fi, tragedy, thriller or horror event may happen, Allah's promise never breaks and for as long as I can remember, He has been Faithful (AL-MU'MEEN). Sadly, many-a-times I am blinded or deafened to the forms in which He has kept His promise and He still keeps it.

But, on to the main issue; WSCD and all the hash tags being done in favor of this day and I hope every single day for as long as Sickle Cell Disorder remains a disease with no cure...*pause*...When I say no cure I mean not everyone with the disease can be rid of it due to many factors. Not that there is no cure, after all BMT has worked for quite a number of persons who have suffered from this ailment! Some of these hash tags include #OneWord which is organized by Sickle Cell Aid Foundation (SCAF) Nigeria and #DoYouKnowYourGenotype organized by Samira Sanusi Sickle Cell Foundation check out their pages on Twitter @SCAF_nigeria @ssscfoundation and on Instagram @scafnigeria @ssscfoundation and donate to their cause in cash and/or kind. We the sickle cellers will totally appreciate.
Moving on, when I saw #OneWord I thought wow! How tough will that be?! And then the first word that came to my mind was #Pain (pretty obvious choice) which includes physical especially physical, emotional, mental, psychological and yes, financial pain! Do you know how painful it is to bring out a large sum of money for something that keeps getting faulty? Imagine you repairing the same problem in your generator or vehicle or handset every other month...yeah? Okay what will be your next thought? Honestly, me, I'm going to get fed up, give the old one out and get a bloody new handset! I pay my medical bills so I know what I'm talking about and I have more love and respect for my parents, Mother, especially. #PAIN!!! But then I saw the sign while I was thinking about my life... since I can't do physical activities I engage in a lot of brain-'wrecking' activities, sadly (the emotional and psychological pain) the sign that said "Hay! You're here today and now after going through so many bad weeks, days, hours and months, with the worst being your recent attack but you still ALIVE! What more do you need? You have been given another chance as you were given after your CS, LC and other attacks you've had to live and love and make right what you made wrong. Sickle cell definitely is more of negative thoughts but there's always two sides to a coin and it's time to flip it and check the positives. You have been given the chances so many times to be the best you can be, to leave a good or maybe even a great memory of you so take it and accept that this disease is your blessing to know the real from the fake and to appreciate every waking moment." After that, my #OneWord changed to #CHANCES and today, I've used this chance to write this piece to ask whoever is reading this to have a heart for sickle cell. I know lots of people are looking to eliminate sickle cell disorder from our community in the near or far future but let's be realistic that might never happen and no need for me to go into explanation but maybe, just maybe it can be reduced through public awareness; schools, from my research, will be the perfect place to start they have a greater and wider reach of audience both through formal and informal educationLeft to me, sickle cell should be incorporated into our basic level syllabus. On our own, we can help make life for those with this disease a lot less distressing than it already is. Discrimination in its various forms are what we go through; some more than others for some have more severe cases than others. We need to help them live whatever number of days they have on earth not asking "Why me?" or resenting their parents, siblings, peers etc. We need to show them a little more humanity because believe it or not sickle cell patients are more human than the average human; they're smart, bright, caring, helpful, graceful, active and most of all they're highly sensitive to other human feelings, words and actions; in other words, they struggle not to "offend" anyone with their ailment and carry lots of emotional and psychological pressure due to this disease. They have fears and doubts when applying for school, work or wanting a spouse, someone who'll love and be by their side in sickness and worse.

Medically, I think apart from worrying about the organic(physical) aspect of a sickle cell patient, a little more attention should be paid to our psychological state as well. Personally, after a severe crises I hardly have the heart to interact or be friendly or even have the zeal for anything; anhedonia, Dr. M called it, a psychological medical condition very distressing can lead to depression or BPD so many of us have unsuspectedly found solace in our analgesics and become addicted not of our will but from the pressure the world has unkowingly put upon us. This, the addiction, many dr's have tried to "avoid" by prescribing less addictive analgesics and some have taken it upon themselves to go ahead and judge or accuse a lot of us of visiting their ER or Daycare for a dose of "pentazocine" that's the analgesic mostly used in Nigeria for severe pain. I have always said if the consulting physician feels or suspects the patient of visting his/her ER just for the pentazocine then he/she should go ahead to refer the patient to a psychiatrist/psychologist. It's not in his/her job description to judge or refuse a patient treatment (which is very rampant in Nigeria). Treat and refer.

I don't know what the latest statistics of sickle cell is but as at 2013, Nigeria had the highest annual birth rate of infants born with sickle cell. Approximately 150,000 which is half of the world's estimate of infants born with this disorder yearly. We can do better, we just need more intense awareness programmes that can and will reach the grassroots and lesser privilaged.

Sickle cell is #Pain #Strength #Survival #Hope #Love #Tears #War #Battle #Drill #Death #Loss #Hate #Discrimanation but most importantly, to me it is #Chances and I'm taking and using every chance I get to do the very best in all my goodly endeavors. 
I know my genotype: HbSS and my prefered and perfect type is HbAA. Do You Know Your Genotype??? 

4 comments:

  1. May Allah ease all our sufferings and may he shower his mercies on our fallen heros .Death is sure painful as i too just recently lost a very close friend to diabetes, she just had a fever she got admitted and was given a drip which triggered her sugar level and we lost her the following morning .i know i shouldnt be saying this but i somewhat always feel we are connected diabetes and sickle cell disorder both are inherited,similar complications ,quite expensive to manage,and it keeps increasing every day.which means there are alot of people who are still ignorant of the disease.painful truth, if we dont make it to the very end atleast we played a part and we shall be remembered for that Just like nura. beautiful write up umm oosha we are proud of you....

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    1. Awww Sweetie *hugs* thank you so much. I'm proud of you too, trying your best to stay on the normal sugar level, which I'm sure is even harder than being sickle cell, cos you have to make sure it neither drops nor rises, may Allah make it easy and make it kaffara for you, ameen thumma ameen. I'm sorry about your friend, may Allah forgive her and grant her Al-Jannah, ameen ameen. Thank you once again, Aayoosh 😘💖

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    2. Awww Sweetie *hugs* thank you so much. I'm proud of you too, trying your best to stay on the normal sugar level, which I'm sure is even harder than being sickle cell, cos you have to make sure it neither drops nor rises, may Allah make it easy and make it kaffara for you, ameen thumma ameen. I'm sorry about your friend, may Allah forgive her and grant her Al-Jannah, ameen ameen. Thank you once again, Aayoosh 😘💖

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