Bethesda Sickle Cell Foundation

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

01/10/2024

29/09/2024

A LETTER TO PARENTS OF SICKLE CELL CHAMPIONS

PART 2

DEALING WITH STIGMATIZATION; The danger of keeping the diagnosis ‘secret’

On many occasions I have seen someone walk into the consulting room in pains. While asking questions, he is quick to say, Oh Doctor, I have 'Rheumatism'. Wow. Do you even know what that means? How did you come about that? The response is ‘I have been having it since my childhood and my Mum told me it's Rheumatism’.
After full assessment and a diagnosis of sickle cell disorder is made, denial follows. ‘No o, that will not be my portion, I have done my genotype before as a child, my mum told me its AA’ etc. It’s quite understandable because in many climes across sub-Saharan Africa, a label of sickle cell disorder comes with a lot of stigma and myths no one wants to be associated with. However, denial or putting up a front is not the best way out. It prevents the child from taking the necessary precautions for healthy living and delays treatment, sometimes leading to needless fatal outcomes.
The term rheumatism is a loosely used layperson term to describe rheumatoid arthritis or some use it more broadly to describe musculoskeletal pains. Rheumatoid arthritis is an autoimmune disease. This means your immune system (which usually fights infection) attacks the cells that line your joints by mistake, making the joints swollen, stiff and painful. This concept is totally different from the pain in sickle cell disorders. Mixing this up can be very fatal.

Most parents do this, firstly out of ignorance themselves, some other times it is with the intention to sincerely protect the child from being stigmatized. Hence, the true diagnosis is hidden from the child as he/she grows up. In some other cases, the mother does this to also protect herself from being victimized or from public ridicule.
The risk this brings must not be understated.

Sickle Cell Disorder is a condition that requires a personal awareness of the triggers of painful crises, processes that leads to the symptoms, complications and daily routines to prevent negative outcomes.

Dear parents, it's important to let your child know he's got sickle cell disorder and educate them on what they must do to prevent painful crises or to manage it when it comes. For example, they must be taught to adjust their clothing to extremes of weather, take 3-4 litres of water daily, be on daily routine medications like folic acid, etc. I once met a sickle cell champion, an undergraduate in his twenties that was not aware he should be on folic acid daily. I found this very disturbing.
It is also important that those who our child/wards spend time with are aware they’ve got this disorder so they can help to exempt them from stressful activities and also to know what to do if crises occur. For example, teachers, colleagues, neighbours should know where to come in to avoid engaging them in crises triggering events and the need for urgent medical attention when symptoms present. There have been cases of a teacher subjecting a champion to severe punishment in a primary school till the child developed crises, yet at that it was thought that the child was malingering to escape punishment.
Yes, more education and awareness needs to be made to correct public perception of people living with Sickle Cell, yet it can start from you as a parent to deal with negative opinion of people and educate all those who will provide a form of supervisory role or care for your ward.
Hiding it does more harm than good.
Champions also should not lie about or hide what they are dealing with. I am not saying they should announce it to the whole world but there must be a circle of carefully selected close pals; roommates, course mates, lecturers, etc that should be aware to offer help and assistance when needed.

Today, medical research is advanced to provide effective care for people living with sickle cell disorders. More research and awareness are ongoing, hence the tides are changing for good. Our greatest need at this time is to conquer our own inner fears and limitations, summon strength from within, fight off naysayers, at the end you will sing the song of victory!
Cheers.

Akintunde Nathaniel MD, MPH
Genetic Counsellor for Sickle Cell Disorders
Director, Bethesda Sickle Cell Foundation (BSCF)
+2347062650892

For Parents/Care-givers of Sickle Cell Champions;
Join our Telegram Channel
https://t.me/+KYmP57W9WVEzNTZk

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

22/09/2024

It's still September..Sickle Cell Awareness Month. A message for employers, health workers, teachers and sickle cell champions...It's a video clip from our last sickle cell awareness program..more to come..

16/09/2024

A LETTER TO PARENTS OF SICKLE CELL CHAMPIONS

YOU ARE NOT ALONE!!!

Ann (not real name) was a young, ambitious and energetic lady with an amiable humorous personality. She looked forward to a future of bliss and fulfilment with her partner, Tim. With some knowledge of genotype incompatibility before they got married, they checked their genotypes. Ann has always known herself to be AS however Tim was not certain. After few hours of anxious waiting at a random laboratory, it was a huge sigh of relief when they were told Tim is AA. Their joy knew no bounds. Finally, they can get on with their relationship. With their 'prayers answered', no further checks were made. They got married that same year and were blessed with a baby boy, Ray the following year.
Everything seemed normal until their son was age 3 when he began to have periodic episodes of pain and swollen hands/foot. To cut the long story short, Ray was diagnosed of Sickle cell Anaemia. Your guess is as good as mine; they were both shocked to the marrow. Tim had to have his genotype tested again in a standard diagnostic centre, only to find out he is actually AS. They needed a lot of counselling and support afterwards.
This story will resonate with many couples. Wrong test results leading to avoidable complications like this. For such parents, you have to forgive yourself and give your best to care for the sickle cell champions you have. Yes, easier said than done. It is definitely not a situation anyone wishes to be in, however, when it comes, the only way to go is to summon courage, develop resilience, hope and determination to support the children all the way. It will be important to also gather the right information, join support groups and access the best health care available to you on sickle cell disease.

For other parents, the story is different from the one narrated above. For some, you were not privileged to check your genotypes before marriage or childbearing; for others you were fully aware of your genotype status as AS couples but were hopeful and prayerful that none of your children will be SS, but that didn’t happen. Whichever one describes your situation, you need to let go of all the ‘what ifs’, ‘If I had known’, etc. Regret, guilt and feeling depressed is not the way to go. All hope is not lost. Yes, its tough; the frequent hospital visits, being awake at night to nurse them, the bills, the emotional trauma of watching your child writhe in pains. All these can be draining and depressing. This is to let you know that you are not alone. Take this write-up as an encouragement. Dig deep, draw strength, pray, network with fellow parents on the same journey and ignore the societal stigma. Be rest assured that all will be well.

Finally, I was touched by a true life story of a Sickle Cell Champion currently in her sixties. She is a successful caterer in Lagos, Nigeria. As of today, she is the one caring for her 94 year old mother who did her best to take care of her in her childhood days as a child living with sickle cell disorder. She recounted how her mother will dutifully keep all the clinic appointments, ignored the nay sayers that thought she was wasting her time on a child that will eventually not make it. There was no way she could have known that it was this child that no one gave a chance to live that will take care of her in her old age. The other siblings are out of Nigeria, so Grandma is living with her now. All these was when medicine is not as advanced as it is today.
There is a power of parenthood, a gift of motherhood, a spirit that doesn’t give up which if activated does wonders.
Today, there are many highly successful people living with sickle cell disorders; Doctors, Engineers, Lawyers, Entrepreneur, Music artistes, and many more. Some are even Sickle Cell Advocates today helping other champions to keep living.

So, Keep keeping strong. You will soon share your own testimony of how you overcame!!

To be continued…

Akintunde Nathaniel MD, MPH
Genetic Counsellor for Sickle Cell Disorders
Director, Bethesda Sickle Cell Foundation (BSCF)
+2347062650892
For all Care givers for Sickle Cell Disorders, Join our Telegram Channel
https://t.me/+KYmP57W9WVEzNTZk

Tomiwa Akintunde
Sickle Cell Foundation Nigeria
Global Action Network for Sickle Cell & Other Inherited Blood Disorders
World Health Organization African Region
@

16/06/2024

There's a myth that specifies a certain age beyond which someone living with sickle cell cannot live beyond. It's simply not true!
Yes, without early diagnosis and proper treatment there's a higher chance of mortality especially before the age of 5.
However, the good news is that I have personally met many sickle cell champions who are in their fifties, sixties and even seventies.
Our guest speaker at the forthcoming event is one of such, a mother of grown up children. This implies that living healthy and long is possible, conception, pregnancy and delivery is possible(for the females), being productive is possible.
But there are secrets to achieving all these. She will be sharing her personal experience and journey at the meeting.
DONT MISS IT!!!!
It's just 2 days to go!!

Link to register:
https://bit.ly/4aUmtWE

Link to the event:
https://t.me/+P94UtH1jAVI2MDM8

SEE YOU THERE!!

15/06/2024

Stigmatization of Sickle Cell Warriors has always been a big issue in our society. Right from birth they are called various derogatory names like 'abiku', 'ogbanje' , witch etc out of sheer ignorance. This goes on into their adulthood as most refer to them as 'sicklers', sadly even among a few health workers that should know better. Teachers talk down on them because of frequent absenteeism from school, family members label them as 'wasters' of meagre family funds because of recurrent hospitalizations, employers discriminate against them on the grounds that they won't perform optimally without even giving them a chance! The list goes on and on.
With the gamut of medical issues they have to contend with, adding the above listed mental stressors to it is, to say the least very unfair.

Yet I have never seen a more brilliant group of individuals, goal getters, achievers, with so much resilience as these warriors.One of such is our guest speaker at our event coming up.

This is where this matter concerns everyone. How do those living with Sickle Cell disorders handle and overcome this stigmatization?
How do friends, family members, teachers, health workers and employers do better in providing succour for these champions(my preference to warriors) rather than contributing to their pain.

Join this discussion on Tuesday, 18th June, 2024 by 7pm on Telegram

Link to register:
https://bit.ly/4aUmtWE

Link to the event:
https://t.me/+P94UtH1jAVI2MDM8

It's just 3 days to go.

See you there!

12/06/2024

To commemorate this year's WORLD SICKLE CELL DAY, Bethesda Sickle Cell Foundation(BSCF) invites you to our AWARENESS PROGRAMME coming up on Tuesday, 18th June, 2024 by 7pm Online via Telegram platform.

It's for all those living with Sickle Cell Disorders, their Care givers(parents, siblings, teachers, friends,etc) and all interested health workers.

You can scan the code on the flyer to register after which you will receive the link to the meeting on Telegram app. Click and join the page.

You can as well click the links in the comment section 👇

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