Growing up with Sickle Cell Anaemia in me is the greatest challenge ever. Sometimes it makes me feel like life has no meaning.
You have a lot of rules to abide by, so all the things I loved doing as a kid I couldn’t do. I had to stop playing football which I liked, completely because I was given reasons not to. I can’t party freely without anticipating crisis and I love my parties. If you go against these rules knowingly or unknowingly then the pain crisis comes to take life out of you. When the pains take over the control of my body, I wish I had someone to talk to me, not necessarily give me advice but to speak continuously as I listen and feel their heartbeat.
This routine helps me a lot because the pains are so persistent and excruciating that I sometimes forget the essence of my existence. I experience a lot of pains in my bones and joints, I have fever and I deal with other complications all in one attack by my Sickle Cell disease.
When I am in a crisis, the pain is usually so severe that no medication is strong enough to make me stop hurting completely. The pain sometimes takes away my physical ability, makes me unable to walk with my legs and sometimes I can’t even carry something as light as a rubber cup. In such situations, I blaspheme lol, but I ask God for forgiveness when I realize my wrong.
Most times I look at my folks, tears in their eyes with no hope but pity for me, thinking that moment of inestimable and seemingly insurmountable pain might probably be my last on earth. Some of my friends even wish they could take some of the physical pain and share with me.
My parents played a strong role in helping me have a normal and healthy life. They gave me hope, helped me through the pains, cried when I cried, smiled when I smiled. I lost some friends over the years, some over a decade ago, and every time I’m being rushed into the emergency ward, I always feel that my time to join them has come but here I am, still in the struggle, still alive.
The idea and fact that they are in a better place, with no pain but Death has become no scare to me, because I have seen many of my type succumb to it. Lately, having Sickle Cell doesn’t really bother me only when I am in serious pains. The truth is I always look at Sickle Cell as my gift and my curse. I became an advocate when I was about 11 years old, from advocating for Child’s Right to HIV and AIDS to Youthful Media and even Global Peace and Unity. I decided to do all these because of the challenges posed to me by Sickle Cell Anaemia, to prove to the world that my type can still do extra-ordinary things if they wish to and nothing can stop them, no! Not even the UN-imaginable pain.
My Life as a Sickle Cell Anaemia Patient
My name is Lydia Ehireme Gana. I lost my dad when I was very little, I was 9 years old, he had cancer and everyday I miss him. I’m glad I have my mum and sisters and i am forever grateful for the love and support they show me every single day because being a parent and sibling to someone with sickle cell anemia is hard emotionally, physically, financially and psychologically.
I’d like to say I grew up like all the other kids but there were days when this obviously wasn’t the case. My condition makes me a walking pharmacy with all the medication I am forced to take such as Paludrine, Nicosan, Folic Acid and B complex on a daily basis. I get stuffed with painkillers such as Ibuprofen, Tramadol and Pentazocine.
These pills help me through my periods of crisis. In case you’re not familiar with what that is though, it’s triggered when some of my malformed red blood cells get stuck and have trouble travelling through my blood vessels as a result of their “sickle” shape. Sickle cell anaemia is an inherited disease. It affects the red blood cells by shaping them abnormally. I hate pills but they help me to cope with all the pain that I experience during a crisis. The only way to truly cure my disease is through a bone marrow transplant, which replaces the “factory” in my body which is responsible for producing red blood cells although it is advised that this procedure is done at an early stage of a sickle cell patient’s life in order to avoid risks, complications and even death.
I manage my condition very well and a lot of people in my life don’t even know that I have this disease, I don’t tell people and probably because I do not look like a sickler it’s a bit easy for me to hide it from the world. I’d like to say this disease does not affect me mentally but it’s not completely true, it doesn’t hamper my logic or reasoning but it’s emotionally draining. Most people are ignorant about this condition and those that aren’t seem to have a subconscious feeling that I’m a liability. I was in a cab once and 2 people were talking about how useless the life of a sickle cell patient was, about how parents of sicklers shouldn’t be encouraged to send the kids to school because they’ll die eventually and at a very early age and are by default a wasted investment.
I come across this everyday, people who feel that we are walking corpses…but here I am. I don’t tell people about my condition because they automatically feel pity for me; they treat me like a feeble baby made of glass. I feel that people who talk to me and know I have this disorder always try to be nicer to me or treat me differently just because I have this condition. Although I realize that the empathy comes from a good place and they are not all really doing this out of pity I just want to be treated normally. A lot of people wouldn’t shy away from that kind of preferential treatment but most times it gets annoying, I get depressed sometimes when I know that I got my way simply because the world sees me as a sickly person.
I haven’t tried to take advantage of such treatment simply because it’s not who I am. I think it’s foolish for people to automatically believe me when I say that I didn’t do something wrong, when I easily could have and always give me the benefit of the doubt just because I’m a sickler. On the flip side, as a result of my condition my attitude towards life is in my opinion a lot better than the average person. I realised at a very young age the possibility that I could very well die whenever I have a crisis, it’s easy to make a lot of plans when you’re in good health but it’s not the same for me. I take life a little more seriously and I was forced to grow up really fast and I have not for one day taken my life for granted. This has brought me closer to God and makes me appreciate each day and everyone in my life a lot more.
I only wish that I could do more to enlighten more people and change their mind-set towards this and have a more optimistic attitude and point of view, never underestimate the support you get from those around you…a little love goes a very long way I promise. My condition may have taken its toll in one way or the other but I still have my dreams and aspirations. I’m a graduate today and that’s just one of the many things I have to be grateful for Death is a grim reality for all of us but it’s a lot more real to me and as a result my relationship with God, my family and friends is one more thing I hold dear to me, I believe that by taking care of myself and trusting in God I will live my life to the fullest. All I ask is to be treated like the next person; I don’t need any constant reminders that I’m this way. I’m only human and a lot of times I get depressed about having this disease.
I have come to accept and recognise that unlike all the other “normal” people, I have a very interesting life story to tell…one I know will be a very long story, I am a very unique person, with a great outlook on life. I do have a right to life just like any other person. Things I do differently are mostly things I have already mentioned.
I’m an optimist and this attitude has brought me this far…I’m curious to see how far it will take me. I’m thankful and very appreciative of the imperfect person which I am today, there’s a reason for everything and a purpose for everyone including me, I’ll find mine eventually.
I write this in my time of pain, it feels like hell. I’ve all but lost my vocals….. (Entonox starts) I am Azinge1 and this is real pain, thunder and brimstone endured by my back. At this point, I can only think of death, weakness and greatness….
I’ve pitied myself enough but it’s time 2 b strong. The ambulance guy just came to check up on me, he’s alot better than I thought earlier. It was hard this time but I take solace in d fact that I have been strong…after all I had no other option. If my body fights on, if my heart remains relentless after encountering it’s fair share of trauma, then maybe…,just maybe… I have a story to tell….
Finally, as my pain settles, I have been humbled, I have endured, I have wept, I have sickle cell.
Then again another pain creeps in… My eyes are empty; I’ve got no more tears, what type of genetic disorder makes a body beat itself? Even to death! This is sickle cell, this is pain, this is real, it’s my cross and I’ll carry it, not with a smile but because I have no other option but to do so. I guess I am living the dream, nightmare in this case… And I only pray I wake up before the grave…..
Dad says to me: after thunder comes calm. My tears can’t even tell my story. My scars don’t begin to explain, Lord into your hands I commit my spirit…But when I get to heaven, you owe me an explanation. In my head, I hear Lionel Richie how long must this feeling go on.
Here we go, again, another pain another day…. This time it’s from the bone, I think I’ll die alone in this world….They say only a fool says there is no God, at this point it hurts me to say I’m a fool.. Whoever says men don’t cry, I beg your forgiveness 4 I constantly lose my masculinity in your sight.
Please don’t weep 4 me, weep 4 those unable to afford hospital.
My name is Toochukwu Edward Egungwu, I was born with sickle cell anemia. The timeline for my current health situation is as follows; in July 2003, swelling in the left leg due to prolonged exposure to stress, which resulted in calf inflammation and tenderness by the evening of the same day. This condition stayed that way for a few months in fact, the leg never quite went back to its normal size.
In April 2004 I was admitted to the Federal University of Technology Owerri, where I was bitten while asleep at night by a venomous farm ant on the inner ankle region, this caused a minor sore, this sore degenerated rapidly in a few days into an ulcer. Alternate wound care was ventured into herbal remedy that didn’t last more than a year. I went to different hospitals around the country but the ulcer was recurrent. September of the following year (2006), I travelled to Enugu to meet a Plastic and Reconstructive Surgeon who introduced Zinc Oxide Adhesives (Elastoplast bandage) for treatment of the leg ulcer, a surgical procedure was done on the leg to get rid of some Varicose veins which healed the ulcer on the inner region of the leg, but It reoccurred on the outer side of the ankle by February 2007 and the same treatment method was used.
Up until 2008, the ulcer kept switching locations on the left leg (between the outer and inner regions of the lower region of the leg), by April the state of the ulcer had worsened, Pentazocine injection was introduced to manage the pain with the Zinc Oxide Adhesive still in use, the prolonged usage of the Zinc Oxide caused the darkening of my left leg from below the knee to my feet (this was always the bandaged region) and so was discontinued. In December 2008, the inner region of the leg seemed to have healed (perfectly) while the outer part still had the ulcer. Pentazocine injection was still being used to manage the pain at the time but lead to the eventual breakdown of the skin on my arms because the veins had collapsed and the injection was being administered blindly. On the left leg, the injection was administered on the ankle, feet and lower area of the thigh. The injections lead to my having DVT (Deep Vein Thrombosis) in the leg characterized by excessive swelling of the left leg (from the knee downwards). I was admitted into Igbobi hospital and then transferred to the private wing of LUTH towards the end of October, was also able to go to India to get the arms grafted the following year (2010 October).
Things were stable for about a year but then the leg ulcer which healed before I was in India reoccurred and the arms broke down(in a different area) due to bad management. My Mother passed away in March 2008 and my father currently has stage 4 prostate cancer and that has eaten into his funds for healthcare and left none for me. I need to go to India to have my leg fixed and the arms regrafted. The pain is so unbearable especially at nights which I spend sleeping in a chair because the position is a bit bearable for the leg. When I am in bed for an hour, the pain starts again. I need to raise $20,000 (Twenty thousand US Dollars) for my trip, surgeries and postsurgical care, hence my honest appeal for help.
My name is Japheth Ezekiel Maichibi,I’m a sickle cell warrior,survivor,fighter,and advocate, I’m Abuja based.. My parents got married far back in the 70’s when there was little or no awareness nor science and technology to detect such findings. For me living with sickle cell is something I cannot define, all I can say is the pain is extremely excruciating and hell,but then despite the everyday pains,discomfort and sorrows,I love myself as a warrior,and I’ve taught myself to accept me for who I am, trust God, pray and see this as a blessing in disguise, though battling sickle cell can affect emotionally,psychologically, financially, physically and mentally.
I am NOT my parent’s mistake nor a product of their ignorance or selfishness,i am of God’s blessing.
Growing up with sickle cell is not an easy thing,in my own descriptive terms I call the Pains EXCRUCIATING UNDEFINED PAINS,I’ve had my own share of the burden to deal with,thankful to my loving and supportive parents despite retirees, they still strive hard to cater for my health needs
I being a sickle cell patient from birth, has been managing a world of constant pain, a world with no access to basic treatment, a world where pain killers and medications to manage my conditions are luxuries.
Grew up like every other kid but with a lot of in and out of hospital experience,routine medications, and so on.
I managed and pulled through primary, secondary education to my university days.
In October 2014 just when I was about to graduate from the University [400 level psychology student of nasarawa state University keffi, Nigeria],I was struck with my worst attack battling sickle cell which started like a mild fever.
I was diagnosed to have Avascular necrosis [AVN] of the left hip in 2014, AVN causes bone tissues around the hip joints to disintegrate or “die” due to loss of blood supply caused by sickle cell, thereby causing mobility to be impossible or with extreme excruciating pain. Doctor said I needed a hip replacement surgery to correct the problem which is quite an expensive surgery. Before then I was battling sickle cell ankle ulcer which I’ve been nursing for over 7 years now,my story is a story of unfolding events of pains and hurts and thus quite a complex case,from one complication to another till this very moment. I was able to have a hip replacement surgery in 2016 which failed 2 times, [surviving my situation can only be God Almighty’s sustenance and supportive family and friends]
I am currently on crutches and need 3 surgeries to ease my pains and get me back on my feet again. Currently these are my conditions –
1. A dislodged hip implant as a result of a failed hip replacement surgery in June 2016.
2. Left Knee ankylosis, can’t articulate the knee 360 degrees as a result of fused knee cap.
3. Two ankle ulcers,one on each leg and also ankylosed ankle as a result of the ankle ulcer and shortage in length of the affected leg.
I’ve been seeking for assistance raising funds since 2018 for my treatments abroad but it’s NOT been fruitful,I’m 30 years old and been battling this since 2014 [5 years in everyday pains, gosh, it can only be God].
Despite all these I live optimistic towards life and cheer on. Music is one thing that keeps me going whenever I feel down.
My positive attitude totally belies my situation. With all I’ve passed through and still passing through in my 3 decades experience battling sickle cell disorder,honestly I’d truly hate to see a new born brought into a life of pains knowing that it could have been stopped and avoided.
I am presently into sickle cell awareness creation as I’ve composed 3 rap audio tracks titled :
1. Blessed child,
2. A brighter day,
3. Able God
Raising sickle cell awareness with my story which is a passion for me,sensitizing the public on importance of knowing their genotype,dishing out hope and encouragement to others out there,and staying SICKLE STRONG refusing to be confined to negative thoughts and move around on crutches.
Miss Dee for sickle cell foundation’s goal is to make sure the less privileged suffering from SCD in Nigeria are happy and have a chance to live a normal life. The Fashion for life event is geared towards helping those with sickle cell and to create more awareness of this ailment.
Our ultimate goal is to build a Sickle Cell Centre where adequate care and attention will be paid to people with this ailment.
Hi. My name is Tochukwu Edward Egungwu. I’m living with sickle cell anemia. In 2012 I as in dire need of funds to travel for surgery. Skin grafts to be specific. I had pentazocine related necrosis on my arms and a very bad leg ulcer. I was referred to Miss Dee for Sickle Cell Foundation by a friend, they came to my aid, followed up on medical reports, physically came to Lagos to inspect my situation and launched a campaign immediately for me. The founder Miss Adaora Nwodo checked up on me daily and my health and progress while her and her team worked tirelessly to raise the funds, in approximately a month and a half, they raised the total of the $21,000 needed for my trip. For that I will forever be thankful. Today I’m married and I have a beautiful 7month old son. All thanks to MDFSCF. I got another shot at life. God bless them.