Sickle Cell’s Prognosis Taught Me to Live with Purpose

Tito Oye avatar

by Tito Oye |

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We were nearing the end of a biology lesson. In an attempt to excite the class for the next lesson, my teacher put up a slide that read, “Why people with sickle cell die young.”

I froze. I knew that the topic would come up eventually, but I did not expect my teacher to take that approach. But I also knew he meant no harm. I mean, what were the chances that the only black girl in the sixth form (12th grade) had sickle cell?

My teacher must have seen the blank expression on my face because he did some digging to find out if I had sickle cell. Once he had confirmed his suspicions, he called me over to ask how I was, how I thought he should approach the lesson, and if I minded letting my classmates know that I had the condition. I told him that he should continue with the lesson the way he had planned it and that I didn’t want to tell my classmates.

When the lesson finally came, I could tell that my teacher had significantly watered down the facts. He added a disclaimer to every symptom of sickle cell and changed his stance from patients with sickle cell dying young to, “With today’s modern medicine, sickle cell patients can have a typical life span.” That is true to some degree, but it’s not the case for everyone with sickle cell.

When I was about 10 or 11 years old, I spent some time researching sickle cell, including its symptoms, and what the diagnosis meant for me. Many websites said that people with sickle cell often have a shorter life expectancy, which didn’t mean anything to me at such a young age. I focused on the symptoms I had at the time, such as pain, jaundice, and fatigue.

I knew the facts, but the reality of it didn’t hit me until that biology lesson.

After the lesson, I learned through further research that the average life expectancy for people with sickle cell is around 40 to 60 years old. When I saw this number, my heart dropped. I questioned all the plans I had for my life. All I could think was, “Will I have enough time?”

There are people with sickle cell living well past the average life expectancy. The oldest person currently living with sickle cell, Asiata Onikoyi-Laguda, is 94. I understand that this is rare, but I know that to get to that point, I must do what I can to encourage and maintain good health. I plan to follow healthy habits such as drinking enough water, eating a balanced diet, and taking my medication. I am praying like Asiata to beat the odds.

My knowledge of that fact has encouraged me to live with more purpose. I have set many goals that I intend to accomplish. I won’t allow sickle cell to limit my potential. My outlook on life has become more focused. I know that with the right level of consistency and endurance, the sky is the limit for me.

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Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.

Comments

Mensah Nimako George avatar

Mensah Nimako George

Thank you so much for helping people with sickle cell including me.
My question is;what are you doing to help people with sickle cell in Africa, especially Ghana and its villages.

Reply
Tito Oye avatar

Tito Oye

Hello Mensah,

I'm happy to help!

Seeing as I am from the UK, I have personally been focusing my efforts in the UK when it comes to raising awareness and supporting others with sickle cell.
Do you know of any organisations in Ghana that do support people with sickle cell?

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Benjamin avatar

Benjamin

There are not much organisations in Ghana. In Fact our government is not putting in much effort to combat the disease here in Ghana. We are all worried when it comes to this situations.

Hope we can do more.

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Teshima avatar

Teshima

Hello,my name is Teshima and I really need some help and advice on how I can help my nephew that has Sickle Cell disease.

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Tito Oye avatar

Tito Oye

Hi Teshima,

Please feel free to ask all your questions on our sickle cell forum: https://sicklecellanemianews.com/forums/

I know a lot of people will be able to share their tips and advice when it comes to looking after someone with sickle cell

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Nzeuneu Ariane avatar

Nzeuneu Ariane

Hello I'm Ariane from Africa, I've been reading the write up and it makes me to see another aspect of sickle cell which is purpose. Many people today think that we can't live a successful life full of dreams and realisations when we have sickle cell disease, especially here in Africa. We use also to forget that all are starting from our mind. Thus if we don't have a psychological well-being how can we transcend even the most vulnerable disease. But I still have a question, how can a person without financial assistance live with the disease?

Thank you

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Tito Oye avatar

Tito Oye

Hello Ariane,

I am happy that you can see the aspect of purpose in all of this, it is a hard thing to do.
We can definitely live a very successful life with sickle cell.

If a person is without financial assistance, I'd suggest that they do research and reach out to sickle cell charities in their area that may be able to help, it may be worth asking a healthcare provider if they are aware of such organisations. Even if the help is not in the form of money, they may be able to provide resources that could aid the care of a sickle cell patient ♥️♥️

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Ari avatar

Ari

Hey thank you so much for this.I have sickle cell and I have a fear that I’ll die young and I’ll never get to experience nothing(I’m only 15).I like traveling but I hate medication because it’s like you need to travel with them and need to pay attention to how much you have and will it be enough.I want to move somewhere else but I’m not sure if sickle cell is going to let me do it and I feel like I’m not worth it.Pls help I feel like I need someone to talk about it!

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Tito Oye avatar

Tito Oye

Hey Ari,

It is a fear that a lot of us have! Unfortunately there's not much we can do to change the fact that we have sickle cell, so we need to learn how to live our best lives with it...even if it means that while we go on the holiday of our dreams we have to carry a whole pharmacy with us.

Please do not let sickle cell stop you from doing what you want to do in life, do not let it win.

Where do you want to move to? Start doing research into the area and reach out to people in those areas who live with sickle cell to see how they find it.

Please message me privately so we can talk, I can help you research and connect you with other sickle cell patients ♥️

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Celena Shaw avatar

Celena Shaw

Hi Ari,

My name is Celena, I fully understand all of your worries, fears and concerns especially because I have Sickle Cell Anemia SS and has felt every one of your worries. Yes, it may feel like a hassle to always have to carry your medications and pain medicines everywhere with you but, it's something you'll eventually learn to deal with. Don't let having Sickle Cell deter you from living life or your dreams (That's what my wonderful mother always taught me) no matter if it may be traveling the world, going on vacation or moving to another state. God didn't put you in this world to die from fear, he put you here to live life to its fullest and to help you learn to live your life in a better, healthier, less fearful, more exciting way of everyday.

My mother has always said to me, "Celena, all I want you to do is live. I want you to live your life, live the life that God gave you because no one else can live it for you".
And I don't think I ever really understood what she means until now, after reading your comment. As scary as it may seem for us as people with Sickle Cell to live, we have to live it and live it up to the fullest no matter if we may fear getting sick, because despite being scared you might find that you can do maybe all the things you've always wanted to do and even dreamt of doing along with so much more. While also, not to mention, have fun doing them whether, you happen to get sick or not it'll be worth you taking the chances!!!!!

I don't think I'd be the person I am if I hadn't taken some chances in my life or had my wise mother to keep cheering me on and yet I'm about to celebrate my 36th birthday in a week which, my mom and I Thank God for all the time because when I was younger doctor's said I wouldn't live past 25yrs but, we never listened or believed them.

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Toyya Robinson avatar

Toyya Robinson

This brought so many tears to my eyes! Thank you so much for this response! Life is truly worth living and no one can live your life for you. Your mother is amazing and I feel her in every way! That’s love!!! Thank you again! Gonna show this to my daughter. She enjoys encouraging words such as these!!!

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Adeyemi Adebayo Joseph avatar

Adeyemi Adebayo Joseph

Is it true as a Sickle cell anaemia patient, we should only get married to Someone with AS genotype to prevent complications and transferring the same SS to a child

Reply
'Toun Tekla avatar

'Toun Tekla

Adeyemi, Drs say that patients with SS should consider marrying someone with AA to reduce the impact by having all AS chldren. Please do not take a chance with an AS person. If you marry an AS person the risk is high as one of the kids if not all may be SS. but with an AA person: AA + SS = AS,AS,AS,AS. AS +SS= AS, AS,SS,SS (There is no guarantee that the first two kids may be AS.)
This should always be you first thought when you meet someone. Always ask in a joking way. Dont forget to take your vitamins and medication. Please feel free to discuss with your Dr. or use the internet to research more to keep you abreast with information.

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Gbenga Samuel avatar

Gbenga Samuel

I'm 21 years of age, I'm a sickle cell patient doing well, just want to say this post is the most encouraging thing I ever came across throughout my sickle cell journey, thank you.

Reply
Tito Oye avatar

Tito Oye

Hi Gbenga,

It is so good to hear that you are doing well!

Thank you so much for your comment, it's really making me smile. I hope I can continue to encourage you during my journey ♥️

Reply
obaro marvin avatar

obaro marvin

your story just inspired me i would also like to help myself and and others in Nigeria the problem is i don't know where to start from

Reply
Tito Oye avatar

Tito Oye

Hi Obaro,

Thank you so much for your comment. One quote that I love is:

"Do what you can, with what you have, where you are" - Theodore Roosevelt

Think about the help you wish you had growing up and start taking small steps to providing that help to you and those around you. Use the things that you have access to. I hope that helps ♥️

Reply
Rose avatar

Rose

Tito, thanks for sharing your thoughts and experience,a lot of people are still suffering in Nigeria due to lack of money to eat balanced meals. What are your medication for yellow eyes?

Reply
Tito Oye avatar

Tito Oye

Hi Rose,

I am not aware of any medication to help with yellow eyes (jaundice). I know that drinking plenty of fluids help with that symptom.

A lot of people in Nigeria do not have access to the treatment/resources needed, it might be worth reaching out to a sickle cell charity based in Nigeria for assistance.

Reply
fola ogunmekan avatar

fola ogunmekan

Hi,
My name is Fola, and I am a sickler in my late 40's and I planned living till my 90's. I am not afraid to say it, I planned telling my stories of how I survived sickle cell till date. But I am encouraging anyone with this disease, to stand up with every gut within them, and fight the disease with a strong resolution that they would live out their lives irrespective of the disease. The greatest cause of death in any disease is the fear instilled by loved one and doctors. I was told I won't live up to 21 by my doctors, some of my friends mocked me when they got to know, but some of those that mocked me lived a healthy lives then, but they died early. But I am still alive. Your live is not in the hands of the doctors though without them some of us won't be here, including me. However, you need to know that your life is in the hand of your manager, who is God Almighthy, only him determine who lives or dies. But I can tell you one thing that science won't agree with, that God wants you to live till your 90's and more. So if you are reading this, find enough information about the disease and also find enough information about your life coach manual which is the bible. THANKS

Reply
Sam Oye avatar

Sam Oye

Hi Tito,
I am a carrier of d AC genotype and about getting married to d love of my life who has d SS genotype. We are aware of the risks involved and have been advised against getting married.
What's your advise for us, u being a carrier too?

Reply
Tito Oye avatar

Tito Oye

Hi Sam,

Congratulations to you and your future wife, I wish you nothing but the best!!!

Please please speak to your wife to get a deep understanding of how sickle cell impacts an individual. This way, you can be there for her in the best way possible, familiarise yourself with her health care plan and do research into the best possible treatments for her.

If you are planning to have children, there is a 50% chance that they will have sickle cell, try and understand what it will mean in terms of the provisions that need to be made for a child with sickle cell and make the necessary arrangements so that you are prepared just in case it happens ♥️

Reply
Clementina avatar

Clementina

Good morning...
i have a friend we have been together for 6 now and i just realize that he his a carrier and the fear of losing him is deep i have heard alot of stories concerning those with the cell my question is is it possible for them to live more longer than that range secondly most of them go through stigmatization because this particular friend of mine no lady want to date him because of that is there a way these people can have a beautiful family without the fear of losing anyone

Reply
Tito Oye avatar

Tito Oye

Hello Clementina,

It is definitely possible for people with sickle cell to live longer than the range. Every individual is different and many different factors contribute to both lengthening and shortening a persons life expectancy.

I would suggest that you encourage your friend to do all that is in their power to make sure they are giving themselves the best care possible. This is easier said than done, and during the moments that he finds it difficult, do not criticise him, be an encourager and help in any way you can ♥️

Reply
Kum Jennett Enam avatar

Kum Jennett Enam

My son is 5 and is just now he is diagnosed with SS. I feel terrible and reading through this makes me feels better. I have been thinking of starting an organization to help educate parents with SS kids here in Cameroun and I need help or someone to direct me do this.

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Chris avatar

Chris

Hello Sam
Since your wife is the one carrying the SS then probably ask her how she handles it, cause being a mother (mother love) and also going through the same lifestyle (SS patient), she'd be the best person to help your child(ren) in hard time. And luckily you don't carry S but you carry AC. My prayers are your child (ren) carry your A to make them AS patient(s)

Reply
Ann-Marie avatar

Ann-Marie

I am a Mother of a sickle cell child, but she is doing well. She wants to become a Medical doctor in the future.

Reply
Shalane avatar

Shalane

Hi their my son is a stickler he is only 2 yr can anyone help recommend me to any natural herbs fr him?

Reply
JoAnn Baldwin avatar

JoAnn Baldwin

Hi Tito
Love your news letter raising awareness on Sickle Cell and helping others get better informed. I too have Sickle Cell. I am 59 years young and feel very blessed to have been diagnosed in the sixties at an early age. I had a very supportive, coddling mother that made sure she did all she could to keep me healthy. I had my share of issues with this illness like legs ulcers or weak immune system but I never had a crisis until I was 40; by then I had had only about four transfusions. I can honestly say that I feel I have lived a pretty healthy life and feel very blessed to have lived pretty healthy this far. There are many things that I contribute to being healthy with Sickle Cell Disease (SS); the most important thing is your relationship with Christ.
I believe that I can be helpful to anyone wanting information to further help them through my life experience.

Reply
Tito Oye avatar

Tito Oye

Hi JoAnn,

Thank you for your comment, I'm so happy that you like my articles!
Wow, not having a crisis until 40 is a blessing indeed! It's amazing that you have been able to get a handle on your health the way you have, I am praying that you experience many more years in great health!!! ♥️♥️

Reply
Eniola Emmanuel Olawale avatar

Eniola Emmanuel Olawale

Phew!!!, Just reading this, I am having tears in my eyes. I am a 19year old sickle cell patient and just this week I decided to drop out from college because I was burdened with the workload and it's killing me, I just couldn't bare the pain. Reading your article had totally changed my view. I am remaking my decision and I will push through to the end. I am really touched. One way or the other, I will continue living since there's hope for me too. Thank you so much.

Reply
Tito Oye avatar

Tito Oye

Eniola, you don't even know how much your comment has made me smile! I am so happy that you were encouraged by what I wrote and I am so proud that you are deciding to continue!!! You can do everything you want and more, sometimes we may have to change our methods because of our health, but that does not mean it can't be done! ♥️♥️

Reply
Ayodeji avatar

Ayodeji

Hello Tito,
This is the first time reading your comments. Very impressed. I have the condition as well and am over 60 years.
I am writing so as to advice me if you have any idea or anyone about writing a book about my experience/journey in life with this SC condition. It is not a death sentence with trust in God and obeying medical advice given all will be well.
Thanks

Reply
Momodou kebbeh avatar

Momodou kebbeh

Hi, thank you for your article. My question is: Is it possible to live in cold regions of the USA or Europe when one is a sickler?

Reply
Tito Oye avatar

Tito Oye

Hi Momodou,

Yes, it is possible to live in colder climates and have sickle cell. I live in the UK and we are not known for our good weather.
If we are in such climates, it is important that we take control of our environment as much as we can and minimise our exposure to the cold. This could be done by making sure that our houses are warm, wrapping up when we go out, consuming warming foods/drinks, using a hot water bottle/heating pad.

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Jerome Chale avatar

Jerome Chale

I'm 32 years old with sickle cell disease, living in East Africa. I've been hospitalized many times than I can count, about 9 blood transfusion & I've been to ICU twice. Currently, I'm taking my Masters at Makerere University in Uganda & I've started Hydrauxyurea treatment. There are better options for sickle cell relief such as Endari & Adakveo but these medicines are very expensive & are hardly if ever will be found in Africa. Why are the sickle cell disease medicines so darn expensive?

Reply
OWUGAH AJIEH PEDRIY avatar

OWUGAH AJIEH PEDRIY

wow!!!! this life changing story was wow. everything is possible is just having the right mindset and listening to the right inspirations. Miss Tito am working on a book tagged the fundamental of sickle cell disease and this story here has inspired me the more. am a haematologist if time permits you i will still like to have more words with you thanks.

Reply
Oluwadaisi Ogooluwa avatar

Oluwadaisi Ogooluwa

Hey! Tito Oye. I believe your write up will surely encourage many individuals. I wish you could stretch your hand to help some warriors in Nigeria and also partner with an NGO body that just started here in Nigeria. I will be awaiting your response. Thanks.

Reply
Hannah avatar

Hannah

Hello,

I would love to chat and get some more information for myself because my partner just told me he has sickle cell

Reply
Olajire avatar

Olajire

I was really shocked when I saw we sickle sell could live 40years by latest but my question is... is there any treatment to forget this pain or to remove this disease in our body?

Reply
Arowolo Akeem avatar

Arowolo Akeem

My girl, Amanda who is just 1yr and 3 months now has just been diagnosed of the sickle cell. My wife is so embittered right away, even me. As I'm, I'm trying my best not to lose my Amanda at a tender age of her life.

Several bills are there to be settled. Also, I'm searching for useful tips to help keep my girl longer. Let's help kick away SCD.

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K avatar

K

Hey tito,

Thankyou ever so much for sharing your story about life with SCD. I am a 19 yo currently living on my own with SCD and have been on amoxycillin for a majority of my life, hydrauxyurea for about 4 years and receiving blood transfusions monthly for going onto 3 years now, and am still trying to live my life as strong as i can.
I remember in school in biology class, i used to dread the time when we got to studying sickle cell and when it came time my teacher was fortunately very lenient and understanding. She always offered to let me out of class during those times, presented information in a delicate way and best of all she was one of three teachers that made time out of their weeks to visit me in hospital when i was admitted, several times at that.

I have been through a lot in my life as of yet and its articles and comments like these that inspire me to want to make something of myself and think of myself as more than just a sickle cell patient. I always give thanks to god that he has brought me this far and that none of my siblings are SS as i wish nothing alike on anyone even my worst enemy.

I've never opened up like this before but i just felt like im so grateful to have read so many peoples stories that id like to speak with you a little more on experiences with sickle and what i can do to help others. Thankyou again. much love

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