Bethesda Sickle Cell Foundation

05/04/2026

Happy Easter Celebrations 🌺

08/03/2026

To all women living with SCD and all care-givers- Happy International Women's Day! You are not alone!🫂
Tomiwa Akintunde

27/01/2026

This is a very touching story!

This is part of why we create awareness.

I hope Zaynab finds healing and restoration. Glad to know she is already part of sickle cell advocacy groups.

I am aware of parents who were victims of wrong genotype results or who married each other ignorantly. Kindly forgive yourselves too.

But no one in this age and time should go ahead to marry with the knowledge of their genetic incompatibility.

There are options to consider medically (though these may be expensive and trickish) if you must go ahead.

Check my previous posts for details.

The bottom line is: DON'T TAKE THE UNWISE DECISION THAT LEADS TO BIRTHING A CHILD WITH SICKLE CELL DISORDER! IT'S NOT WORTH IT.

Tomiwa Akintunde

My name is Zainab. I’m 27 years old. An SS.
That is, I live with sickle cell disease.
My parents are both AS.

Oh, they They knew.
They were told.
They still married.

They said God approved it. They said love would be enough. They said faith would cover the consequences.

I am the consequence.

I was diagnosed before I was two. My childhood memories are not playgrounds or cartoons,they are; hospitals, needles, and adults whispering when they thought I couldn’t hear.

In primary school, I missed classes so often that teachers stopped asking why. Some classmates thought I was pretending. Some thought I was cursed. I learned early how to smile while feeling different.

By secondary school, the pain episodes became more frequent. I would wake up excited for school and end the day on a hospital bed. I watched my mates grow normally while my life moved in pauses, school, hospital, recovery, repeat.

At 15, I lost my younger brother to sickle cell.
We were both SS.

That day changed me forever.

My parents broke down in front of me — crying, apologizing, saying “We followed faith. We didn’t think…”
But the damage had already been done.

Sometimes I forgive them.
Sometimes I resent them deeply.
Both feelings live in me.

In university, I tried to be normal. I joined sickle cell advocacy groups, volunteered with awareness organizations, spoke at events, encouraged parents to test their genotype. People call me strong. They call me a warrior.

What they don’t see is me crying alone at night after another silent pain episode.
They don’t see the fear that comes with planning a future in a body that doesn’t always cooperate.

And Relationships?
That’s another wound.

I’ve been loved… briefly.
The moment conversations turn serious about marriage, children, commitment….they leave. Some are honest. Some ghost me. Some promise forever and disappear quietly.

One man once said he would do anything for me. He talked about taking me abroad, better care, a life without fear. I believed him. For the first time, my heart rested.

Then one day, he stopped calling.

That heartbreak triggered one of the worst crises I’ve had as an adult. Not because of physical stress but because hope collapsed.

Now I’m older. The pain episodes come differently. Less dramatic, but more exhausting. My body recovers slower. My fears are heavier. I ask myself questions my parents never asked each other.

I am strong, yes.
But I am tired.

If you are AS and the person you love is AS, please love your unborn children enough to stop and think. Faith is not a license to ignore knowledge. I am a proof to that

I didn’t ask to be a lesson.
But if my life can prevent another child from being born into avoidable pain, then my voice matters.

24/12/2025

Merry Christmas!!

15/12/2025

Bone Marrow Transplant (BMT) in Nigeria: Hope, Reality, and the Power of Prevention

In recent years, Bone Marrow Transplant (BMT) has gained attention as a curative option for Sickle Cell Disorder (SCD). This growing awareness is good news, especially the great accomplishment attained by Sickle Cell Foundation, Nigeria (SCFN) in partnership with Lagos University Teaching Hospital (LUTH) in bringing to Nigeria, a world class access to BMT. However, it is equally important to balance hope with reality, especially in a country like Nigeria where SCD remains a major public health challenge.

It is no longer news that Nigeria has the highest burden of Sickle Cell Disorder globally with estimates of between 4 to 6 million people affected. This article highlights the progress Nigeria has made with BMT, its benefits and limitations, and why prevention through informed genotype choices remains the most practical solution.

1. A Brief History of Bone Marrow Transplant in Nigeria
Nigeria’s journey with Bone Marrow Transplant began quietly but significantly at the University of Benin Teaching Hospital (UBTH). UBTH made history by successfully performing Nigeria’s first bone marrow transplant for a patient with Sickle Cell Disorder, proving that such a complex procedure could be done locally.
This milestone opened the door for further development of transplant medicine in the country.
More recently, a landmark breakthrough came through the partnership between LUTH and SCFN. This collaboration brought structure, world-class expertise, and advocacy together, making BMT more visible and more accessible within Nigeria than ever before. It is the result of years of hard work, resilience and untold commitment to the cause of Sickle Cell Disorder for over three decades.

For the first time, Nigerians living with SCD can realistically look within the country for a potential cure rather than facing the financial and emotional burden of traveling abroad.

This news expectedly was met with mixed reactions. For some, it has brought hope that suggests that finally, one can choose a spouse without the limitations of genotype incompatibility while for others, the burden of the huge cost of BMT is not soul-lifting considering the fact that this is not affordable for an average Nigerian. It is important that we balance hope with reality, hence this write-up.

2. The Pros: Why This Is Good News
The LUTH/SCFN partnership represents real hope, especially for people already living with Sickle Cell Disorder.

Key benefits include:
Access to a potential cure within Nigeria

Reduced need for expensive medical travel abroad. The goal of LUTH/SCFN partnership is to reduce the cost of the procedure by 60% compared to going abroad.

Availability of specialized care from renowned medical professionals/experts from different parts of the world.

Renewed hope for families who have battled SCD for years
For individuals with severe complications, BMT replaces faulty stem cells with healthy ones thereby bringing an end to frequent crises, organ damage, or poor quality of life, BMT can mean freedom from pain, hospital admissions, and lifelong medications. This is massive.

This progress shows that Nigeria’s healthcare system can handle advanced treatments when given the right support.

3. The Cons: The Reality We Must Not Ignore
Despite the progress, Bone Marrow Transplant is not a simple or widely affordable solution.

Major challenges include:

High Cost
A bone marrow transplant in Nigeria can cost several millions of naira, depending on complications and length of care.
For the average Nigerian family, this cost is simply out of reach.

Need for a Suitable Donor
BMT requires a closely matched donor, usually a sibling. Unfortunately, many patients do not have a compatible donor, making the procedure impossible regardless of funds.

Target Patients
This focuses on children and young adults who generally have better outcomes.

Complex Process
Bone marrow transplant is not a one-day procedure. It involves:
Extensive testing and preparation
Chemotherapy to destroy existing bone marrow
Long hospital stays

Like every other procedure, chances of some complications must be factored in. It must be emphasised however that with state-of-the-art stem cell processing lab and post-transplant clinic in place, risks of complications are reduced to the barest minimum.

Lifelong follow-up in some cases.

These realities lead to one unavoidable truth:
Prevention is still better and far cheaper than cure.

4. Why Prevention Still Matters Most
While BMT offers hope for those living with Sickle Cell Disorder, those yet to marry or birth children must still seek to ensure genotype compatibility, go for genetic counselling and take necessary precautions to prevent further birth of babies with SS or SC genotypes.
The most effective, affordable, and sustainable solution remains informed genotype decision-making:

Knowing your genotype early

Understanding compatibility before marriage

Making choices that prevent bringing children into a lifetime of avoidable pain

No cure, no matter how advanced, is cheaper than preventing Sickle Cell Disorder from occurring in the first place.

5. Conclusion: Hope with Responsibility
The availability of Bone Marrow Transplant in Nigeria is great news for those already living with Sickle Cell Disorder. It brings hope closer to home and reduces dependence on foreign medical systems.
At the same time, this progress should encourage:

Government to provide subsidies and health insurance coverage

Corporate organizations to fund transplants through CSR initiatives

NGOs and foundations to support patients who qualify but cannot afford the cost

BMT is a breakthrough, but prevention remains our strongest weapon.

Akintunde Nathaniel MD, MPH
Director, Bethesda Sickle Cell Foundation (BSCF)

Tomiwa Akintunde

16/08/2025

Dear Sickle Cell Champions❤️

Trust you are keeping on well.

Just a quick one on taking heed to your mental health.💚

Living with Sickle Cell Disorder(SCD) isn’t just about managing pain—it’s also about caring for your mental health. The stress, hospital visits, and uncertainty can lead to feelings of depression, anxiety, and loneliness. It's a valid feeling. But you don't have to entertain these.

💭 Common Feelings You Might Have:

✓Feeling sad or hopeless

✓ Dealing with stigmatization and discrimination

✓ Worrying about when the next crisis will happen

✓Feeling left out because of missed events

✓Getting tired from always having to explain your condition

✓Wondering how your future will be.

The list is endless

🌱 Ways to Cope:

Talk to a Professional – A therapist or counselor can help you work through emotions. Just a little encouragement can make a difference. You can be down, but you don't have to stay down. I am just a dm away.

Find Your People – Join SCD support groups online or in your community. A group where you understand each other, feel each other's pain and share coping strategies with each other. There's power in building such community. You can join our community of champions on telegram at Bethesda Sickle Cell Foundation using this link:

https://t.me/+P94UtH1jAVI2MDM8

We share insightful updates on new treatment plans, motivation from Champions that are doing great for themselves and generally supporting you through the journey.

Practice Stress Relief – Meditation, Music, gentle stretching, exploring nature, visiting tourist sites, or deep breathing.

Educate Others – Help friends and family understand your needs. Not everyone is mean. There are still lots of people out there that care genuinely. Be open to relationships and support.

Take Care of Your Body – Stay hydrated, rest, and follow your treatment plan.

💡 Remember: Your mental health is just as important as your physical health. Asking for help is a sign of strength, not weakness. 💪🏽
You are not alone—there’s a whole community rooting for you. ❤️

I care.

Enjoy a restful day!


Tomiwa Akintunde

14/02/2025

LOVE AND LIVING WITH SICKLE CELL DISORDERS

Yeah...It's February 14! This is to wish you a Happy Valentine's Day ❤️.

To the singles, this may trigger apathy or even resentment. No worries. It won't be so forever.

To the 'coupled', officially or unofficially, sure there are plans for the day already. Let it be a celebration of true love that gives, that is pure and sacrificial..not crossing boundaries.

I suppose it's a good day to talk about the love life of Sickle Cell Champions.

Ideally this shouldn't be a topic to discuss because sickle cell disorder in itself should not affect your marital life. However, your perception of yourself, carriage, societal perceptions and misconceptions has necessitated a discussion on this.

THE FEARS!

I have raised the issue of relationships with quite a number of young people living with sickle cell disorder and it's a topic most don't seem interested in for obvious reasons. Perhaps thoughts like..'Why get into a relationship when I don't really know how long I have to live?', 'I have enough issues(pain and the likes) to deal with than add the burden of relationship to it'. 'Does anyone even want me?'. 'Who wants to marry a liability?' We can go on and on.
While these concerns are valid but they are so because you agree to them in your mind!

If you believe you will fail and probably not make it in relationships, that's exactly what will happen.

If you believe you will succeed and get married someday and have your children, it will also happen.

So really it's up to you what you choose to see, believe and tell yourself daily.

Today, we have hundreds, perhaps thousands of sickle cell champions; male and female who are married and doing very well with their children. So why not you?
Of course such marriages hold at a cost and price paid more by their spouses, but that is what true love is all about anyway, not what today's Gen Z's has defined it to be.

As you think in your heart, so you will be.

God created our minds to be powerful to attract to us what we allow to dominate it.

You deserve to love and to be loved. Sickle cell should never exempt you from this beautiful gift of life but you have to give it a chance.

THE FACTS

I will not hide the realities, the challenges and the issues that comes with being a Sickle cell champion. But the truth is that they are surmountable.

For instance, for the females, there are genuine concerns that comes with handling the expectations of pregnancy and child birth. Pregnancy places extra demand on already low blood levels which may cause anemia in pregnancy. In addition, there is a higher risk of more frequent painful crises. The mode of delivery needs to be well planned. The lesson in all of these is that a female living with sickle cell should not just get pregnant at random without a proper pre-pregnancy counselling with specialist doctors such as obstetricians and haematologists. It has to be planned. Some medications such as hydroxyurea must be stopped months ahead of pregnancy if you are on it. These specialists will also monitor the pregnancy all through and plan for the delivery, of course in a standard health care facility. This way, we can avoid complications and have positive outcomes.

The above immediately highlights the fact that a sickle cell champion cannot afford random indiscriminate s3x leading to unwanted or unplanned pregnancy! It's a high risk. On a day like this and beyond, you can't afford to loose guard!

It's a known fact that infections, like STI also trigger crises. This will also be applicable to the Males. You really don't want to have HIV, Hepatitis B or C, Syphilis etc in combination with sickle cell disorders. It's a good advice to zip up!

We have head stories of some families dissolving relationships when they find out that the person their son or daughter wants to marry is living with sickle cell disorder. While we must discourage this practice and raise more awareness, this narrative is more common in some instances. For example, the financial status, academic levels, location and the personality of the sickle cell champion can tilt the family's decision. It is very unlikely that a family will disallow a very wealthy, successful entrepreneur based in United States of America willing to pay bride price in dollars from marrying their daughter because he has Sickle cell disorders! Lol 😆
I hope you get my point.
The lesson here is; ADD VALUE TO YOURSELF!
There is a personality you bring to the table that dwarfs any supposed 'limitation'. It's a true cultural reality!

THE FINAL WORD

Build a strong community of friends that show empathy, care and true love.
Be a valuable asset to them also. You are brilliant and smart. Give what you have so your friends are obliged to reciprocate it.
From this circle of friends, surely there will be one that will stand out that wants to go the extra mile with you in Marriage. I have seen many happen. Of course you know they have to be verified AA genotype!

Looking forward to your wedding invitation card when the time comes.

Happy Valentine's Day

Akintunde Nathaniel Akintomiwa MD, MPH
Director, Bethesda Sickle Cell Foundation(BSCF)

For clinical mentoring, sickle cell champions can join our telegram page:
https://t.me/+P94UtH1jAVI2MDM8

Tomiwa Akintunde
Sickle Cell Foundation Nigeria
Global Action Network for Sickle Cell & Other Inherited Blood Disorders
National Primary Health Care Development Agency
University of Ilorin, Nigeria
World Health Organization African Region

27/01/2025

Question and Answer Series: In these series, we will be answering questions that came from participants at our last awareness program.

Question:
Apart from prescribed medications, is it advisable to care for a sickle cell patient in the herbal way?

Answer:
This is a very interesting question especially in African settings where there is such a strong belief in the efficacy of herbal preparations and 'concoctions', moreso among the older generation.

Aside the locally made herbal medicine we were used to in the past, today there has been a lot of research and advancement in the production of these preparations with so much branding and even some with the approval of local food and drug agencies.

Given the above, the answer to this question is not a straightforward 'yes' or 'no'.
However, I will state facts that we know.

1. Most of these herbal preparations have not been properly assayed. What this means is that their effective dose haven't been determined, so it's bound to have treatment failure. Yes, many will argue that they work and they have certain proofs and testimonies to back their claims. But that a formulation is effective in treating an ailment doesn't mean that it's safe.
There are some side or even adverse effects that are short term or long term. There are documented cases of some of these adverse effects- Nephrotoxic (kidney toxicity), hepatotoxic (liver toxicity) and many more. Some of these formulations have even been found to impair proper brain functions
Secondly, some of these herbal preparations have been discovered to be adulterated with orthodox medications. Such that it's difficult to tell which actually worked.

2. The approval of any medicament by local drug regulatory agency most times only ascertain their safety profiles and not necessarily their effectiveness in treating the ailments the manufacturers claim to use it for. An expert puts it this way,

'It may not cure you but it will not kill you'.

For those knowledgeable in the processes and procedures involved in the approval of newly discovered formulations, it will go through the process called Drug Clinical trials before they are approved for public distribution and consumption. This process has 4 stages and is usually lengthy (can take more than 10yrs and above) and it's also capital intensive at the same time. In addition to the above, there are several strict bioethical conditions that must be met which most local companies can't afford. So it's never done.

3. Most herbal medicines and supplements are at best used as adjunct medications. Most of their constituents are minerals and vitamins that act as antioxidants which helps with your overall health and well being. It is my firm belief this may be helpful but you can get these benefits also from your fruit and vegetable diet that is recommended for Sickle cell champions.

4. However, be weary of drug-drug interactions. Most of these herbal formulations counteracts with orthodox medicines when they are co-administered.

My submission, in summary is that you stick to scientifically proven and researched medications prescribed by your doctor and follow religiously your daily routine of drinking lots of water, eating balanced diet, taking portions of fruits and vegetables daily, use of folic acid and vitamins daily , avoiding stress and extremes of weather etc.
If you are still pressed to use any preparation, let it not be at expense of your doctors prescription.

Hope this helps!

Akintunde Nathaniel Akintomiwa MB Ch B, MPH
Certified Genetic Counsellor,
Director, Bethesda Sickle Cell Foundation

Tomiwa Akintunde
Sickle Cell Foundation Nigeria
Global Action Network for Sickle Cell & Other Inherited Blood Disorders
National Primary Health Care Development Agency
World Health Organization African Region

22/12/2024

To all Sickle Cell Champions;

GIVE UP?? NEVER!!!!

As year 2024 draws to a close, we thank God for His mercies we have enjoyed inspite of all the challenges. We thank God for life.

For those on the verge of giving up the fight, I am here to encourage you not to.

Yes, the pain is intense, the struggle is real, the feeling of hopelessness, the stigmatization by those that we thought should care, even friends and family, YET, all these is not enough to give up!

You may ask, Sir why shouldn't I give up? Is life worth living? Is there really a future to look forward to? Is there really any relief in sight?
Yeah, these are valid questions. I truly may not have all the answers but I will try.

Why you should keep on living?

I have met sickle cell champions who have also gotten to that point of loosing it all in the past. But somehow, they turned that corner and today they are living a fulfilled life. Some have become global sickle cell advocates with access to the best of care, fame and wealth. Some have enjoyed a sort of divine touch with significantly improved health status. Doctors, Engineers, Nurses, CEO's, Vice chancellors, Governor's , Professors, Entrepreneurs, Music Artistes etc have emerged, all from the same person who was not given a chance to live years ago. They themselves look back and wondered at the folly of their ignorance of the past. When it seems you cannot take it anymore,it's just another test of your resilience; hang on, fight, stay, keep your mind steady, the worst is about to be in the past.

Way forward

1. Dare to Dream Big. Set your goals and visions for your future and mean to achieve them. Science has proven that your body will go in the direction of your mind. Your mental strength to achieve a thing can suppress the physical pain of your body. One of us here just graduated with a First class from Unilorin despite frequent hospital admissions for Crises. That's the way to go. Dream and Dream again. You only loose when you give up. Winners don't quit. When you write down what you want to achieve in the next 50 years(and mean it) , you are literally telling your body, see, I will be here for that long. Yes, there are other variables to this but it sure works, all things being equal. A strong and positive mindset will definitely add more years to you than a negative or neutral one.

2. Don't keep to yourself. Find a community of friends, mentors and confidants you can express your thoughts to. If you process your thoughts alone all by yourself, you will do crazy things. That's why I am here. Talk to me , talk to someone about your struggles, feelings and challenges. Counsel, solution, clarity and wisdom can flow out of it. Never underestimate the power of talking therapies.

3. Stop the blame game!
One of the key steps to healing and health is to purge yourself of offences, either towards God or Man. Questions like; Why did God allow me to be born this way? Why did my parents give birth to me? Stop all the 'Why' and 'If' questions. The truth is there are questions we will never be able to answer on this side of time. There are things we cant do anything about , we can't change them. Pushing that thought line keeps generating more questions than answers thereby creating more mental stress and pain. So, be forward thinking. You are here and you are here to live and make impact. You have a purpose from God , dare to discover and fulfil it . Many Sickle Cell champions have reshaped their world positively! Why not you also?

The strength of a man is seen in the ability to turn adversity to prosperity! That's your call now!

You can do it.

Cheers!

Akintunde Nathaniel Akintomiwa MD, MPH
Genetic Counsellor for Sickle Cell Disorders

01/10/2024

Life with Sickle Cell – Aisha, the schoolgirl with dreams of being an artist and future Olympic gymnast

Meet Aisha a sporty, inquisitive, a ballerinaand has dreams of being a future Olympic Gymnast.

She loves art, is well spoken, kind,and generous. She is more than her medical condition of Sickle Cell.

The nine-year-old and her doting mother , Penda , shared her experiences to talk about life with the condition and the impact it has on family life, school and day -to- day activities.

Full article.

https://bwc.nhs.uk/news/life-with-sickle-cell-aisha-the-schoolgirl-with-dreams-of-being-an-artist-and-future-olympic-gymnast-13314