Lets hear our Sickle Strong warrior Maichibi Ezekiel Japheth’s story.
Here is one of or survivors who is going through SCD complications and needs URGENT assistance,here is his story in his own words.
“Like I said earlier October 2014 was the genesis of my worst attack battling sickle cell which was avascular necrosis of the left hip.. It all started just when I’d gotten my project topic, came home to get some materials because my dad also studied psychology..
Got home announced to them I’ll soon be done with the university, we all celebrated and rejoiced together.. Not knowing sickle cell was about to struck me Aside this, I remember I was told that I was diagnosed with sickle cell at an early age because of the signs my elder brother is SS so it wasn’t hard to detect but I lived a normal crisis free life until around 5 or 6 years..
I remember feeling strange, body pains and all that.. Managed through with on and off episodes of crisis.
So in 2014 it started like a mild fever, then crisis just as I’d prepared to return back to school to start my project, I remember it was a Sunday, I slept and woke to take a leak, so after a few steps I started hearing a squeaky sound in my left hip, at first I thought it was a normal thing, I called my mom and informed her, my mum who is my best nurse and caregiver ever, asked me to observe it, like magic that night I couldn’t sleep, it was all excruciating pains and hurts, no comfort, no joy, I remember crying like a baby, funny thing is I was battling ankle ulcer before AVN struck; we left to Allied surgeries in Gwagwalada, had an xray taken of the affected leg,the expression on the doctor’s face, I knew there was trouble, he explained I had avascular necrosis of the hip bone and will require a hip replacement surgery.
Wow, I was totally shocked and lost.. Funny thing is the leg never gave any sign, no pains, no nothing, it just hit me real hard that it affected my hip ball and socket joint.. Badly eaten up from the xray. We were told how expensive the surgery cost, which the money wasn’t even available are retired civil (parents are retired civil servants in the education sector].
Truth is even if we had the money the surgery couldn’t be carried out, why because I had ankle ulcer I was already battling with before AVN struck, another sad story, we were told to treat the ankle ulcer first else if we carry on with the surgery, infection will rise to from the ankle ulcer to the surgery site. with the hip pain and ankle ulcer, I was told to be on wheelchair since I cannot move on my own.. I was confined to the wheelchair for a year plus..
Now how come I ended up with ankylosis knee?
Due to the excruciating everyday pains, I got used to a particular comfort zone, the only point I derive little comfort for sleep, it required I bend the affected leg, gradually like joke, I started having pains on my knee, I couldn’t stretch it straight.
In as much as it was massaged, whenever I straighten my leg the pains was hell.. AVN is a nightmare I swear..
After straightening the leg, I manage to sleep after pain med, but funny thing is I wake up to find my leg bent back to its former position, gradually I ended up with fused knee [ankylosis]..
Leg ulcer go now, it won’t heal so that we can try go for hip replacement surgery.. No way, I was battling AVN, an ankylosed knee, and ankle ulcer all on the same leg,was on wheelchair from early 2015 to around May 2016 where we got directed to a doctor who told us he can perform the hip replacement surgery while the ankle ulcer is treated.
I’ve really seen the worst of it all battling sickle cell, but I thank God I’m alive and kicking, thank God for supportive family and friends, God Almighty sustained me.🙏
It got to a very sad time I was hit with chest syndrome [enlarged heart] very painful complication also.. Oh my God.. Only me??
I couldn’t fully breath, the only choice of sleep was me laying face up, couldn’t turn left nor right, I was in that position for two weeks plus.. I ate facing up despite lying down.., as if it wasn’t enough, I stopped stooling, but I was eating fine, we were told it happens because I’m not exercising my body..
All these happened to me, not just saying.. These are realities and cross of battling SCD.
I am a warrior trust me, I refuse to be locked behind sickle cell’s cell..
Now due to the fact that I wasn’t stooling, I was giving so many med, maybe reaction, I then couldn’t urinate, what’s all this, amidst all this, I had a supportive family, supportive parents, mum especially.. Her care and prayers kept me going.. I was at home when I noticed I couldn’t pee on my own, rushed back to the hospital, the doctor said I’m just a lucky boy, my bladder was all filled up, if we had wasted time, it would have been another complication.. Catheter was inserted in my private part,[oh my God, that thing is so painful same way a catheter is placed in the vein for dripping purposes, exactly was done to aid me pass out urine, so imagine the pain]
I was passing urine through it,I was with the catheter, not stooling, AVN pains, fused knee, chest syndrome, ankle ulcer, I truly almost gave up but somehow God was whispering to my ears, fight on, don’t give up my son, I have huge plans for you, plans if good and not of evil..
I kept pushing fighting for my life, my mom being experienced had to wear gloves and used her fingers into my anus to create a passage for stooling, miraculously she was able to bring out some debris, very strong and smelly.. Gradually I passed stool, thanks to mummy and her reasoning, though it was really painful, it was for my good doing it so..
Gradually I was administered tamsulosin 400mmg,chest syndrome went down, I was breathing well, tho my heart was enlarged from the x ray, God took charge I could sit and breath, gradually catheter was removed, I started peeing, tho it was really hard to let it out at first even with the feeling of urination but gradually it was stable..
Praise God I was getting better.. Back to surgery matter, there was no money, we sold some little items, asked from family and friends.
Though it wasn’t complete the doctor agreed to do the surgery, [2.8 million naira], June I had a successful hip replacement surgery,but the aftermath pain was HELL I TELL YOU, after a week I had a muscle release for the knee.. Placed on cast for a month plus… Started therapy, got discharged around August ending.. Came home, though the pain was there I was happy, but my knee cap was damaged already[currently the leg is just straight, can’t articulate it 360°
Like the devil was just on my case, I was born to be great so he’s always jealous of me..😝 😉 After two weeks, my replaced hip got dislodged. Oh my goodness 💔💔💔💔💔😭😭😭😭💔😭💔
How?? Nobody knows, I didn’t fall, I didn’t lay down anyhow, just like that it dislodged..
Haaa, went for revision surgery, back into the theater in September, another dose of excruciating pains [I think if pain were to be a drug, then I’m overdosed in it… 😂 😂.. The surgery was refixed, got discharged came home, I was managing on crutches [currently on crutches till date].. Had a long stay in the hospital..
Now how I ended up with a dislodged hip is a mystery.. After a revised surgery, I enjoyed my hip for a month I think, then went for an x-ray to make sure my hip was properly in position, lo and behold, it was dislodged agaiiiin 😱😱😱😱😱😢😢😭💔💔 Na wah ooo, Jay don suffer for sickle cell hand no be small..
I cried my eyes out later I told myself and my parents, I’m not going through the pains I’ve gone through, I’ll live with my dislodged hip like that for I am tired, not to talk of expenses and the stress..
Till date I battle the hip pain, the knee pain, and the ankle ulcer which keeps fluctuating in healing..
Heals to a very tiny state, and of a sudden explodes again..
I dress the ankle ulcer myself with everything possible till date it’s still there..
I am a warrior, survivor, fighter and conqueror,a testimony of God’s goodness and glory, I know I have a purpose..
All I just want to do is,create sickle cell awareness, get back on my feet, finish up with my program in school [B. Sc Psychology],reach out to the misinformation confusing people about the disorder and get them informed and educated properly in my own little way I can dish out, tackle the ignorance, make move to fight against the discrimination, stigmatization, negligence and lack of infrastructural support in any little way I can achieve with my story and songs, I have a lot to say and advocate for battling this dreaded disease called SICKLE CELL DISORDER, I believe sharing my survivor story, and experiences alone is hope and encouragement to the public,and someone out there going through a more worse dilemma, because I am a warrior, a conqueror, fighter, and survivor refusing to give up, sickle cell is never a death sentence, nor are we a time bomb nor walking corpse, there’s massive ignorance and misinformation about it, people believe we don’t live long, some say and believe we don’t age up to 15 years, we die, but it’s wrong, nothing like that, I’m 29 years old and still counting on, we have warriors who have lived up to their 90’s. I want to be a VOICE for and to my fellow warriors, reach out to those dying in silence, and lack of information, contribute to the management of sickle cell in any little way I can. Stigmatization and discrimination is a killer, I want to help battle and tackle this issue most importantly in my own little way and that of my team as God enables .
I’d truly HATE to see a new born brought into a life of pains knowing that it could have been stopped and avoided, my parents got married far back in the analog age when there was little or no awareness nor science and technology to detect such things, we live in a global digital world now, let’s seize the opportunity and see how we can together ‘unsickle’ our future generations from this trauma and nightmare of undefined excruciating pains. Truth is despite our pains and hurts, tears and sorrows, God our creator is truly faithful.
I live in everyday pains but I am not stopping, I have a huge dream and passion for touching lives, inspiring someone who is in my kind of situation or worse. Not just sickle cell I want to be a motivation, an interesting story and inspiration, a beacon of hope to people in one form of pain or the other be it cancer, diabetes, or whatever problem that concerns having hope in life and NEVER giving up. We live in a superficial world where diseases, ailments, and pains live amongst us, we all need HOPE AND ENCOURAGEMENT in one way or the other, we all have struggles, be you rich or poor, white or black..
I really need the help, attention, push, support, and publicity. I’m currently in a public appeal soliciting for assistance raising funds for my treatments abroad, [3 stages of surgery] I am a fighter and I want to share my experience with the public, reach out to warriors [sickle cell patients], call upon the government for better health care facilities for sickle cell patients, sickle cell is believed to be a black man’s disease but not withstanding it affects and concerns the world so long love, marriage, and reproduction counts in life.
I want to pass information with my story and songs, the hash tags
#5iveWords activism, #PleaseKnowYourGenotype, #SickleCellisReal, #SickleCellisNeverAdeathSentence, #Don’tYouEverGiveUp.. we inscribe on t-shirts, caps, stickers, and flyers, create talk shows, interviews, brief but concise documentaries, and whatever possible.. Amidst all this I have two songs to my credits I did amidst my everyday pains, inspirational, sensational, soul touching and lifting songs titled..
1. Blessed child
2. A brighter day
Attached are the song links..
A BRIGHTER DAY
Wow ! This is what we go through in our sickle lives; but as always we are sickle strong survivors we would always scale through with the help of God, hold on strong help is on its way.
If you feel moved to help please contact us via our social media handles IG,Facebook,Twitter @audreysicklecellfoundation or email us @firstname.lastname@example.org
#wegonmakeit #sicklestrong #warriorexperiences