Sickle Cell Convos

18/09/2026

Happy Sickle Cell Awareness Month. Please let's keep spreading the word about Sickle Cell. Also, if you can donate blood, please sign up if you don't already donate. If you have signed up, please remember to keep your appointments. Finally, Sickle Cell is not one size fits all. Remember that your care has to be tailored to you as an individual.

04/09/2026

September! A very significant month in the sickle cell community. Spread the message. Shine the light. Donate blood. We can never talk too much about sickle cell.


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10/08/2026

19/06/2026

Happy World Sickle Cell Day 2026 🥳🎉 This years theme is "Closing the Survival Gap: Equity in Sickle Cell Disease". Happy WSCD to all my fellow warriors, the entire Sickle Cell Convos community and the sickle cell community at large; home and abroad. There has been significant improvements regarding sickle cell in the western world, however Nigeria (that has the highest burden of sickle cell) and other countries in Africa are moving at a slower pace. I hope that as the awareness spreads and we continue to advocate for SCD, the gaps in care and survival outcomes are closed. Happy celebrations 🥳🎉 let's continue to advocate for ourselves and our community. May we witness and celebrate many more world sickle cell days 🙏🏾

28/05/2026

If you're a sickle cell warrior presently in England, you have more reasons to stay out of the sun and keep hydrated. You want to avoid caffeinated drinks especially alcohol and energy drinks. You can add fizzy drinks to the list if you wish. Remember caffeine is dehydrating so if you do take anything that contains caffeine, you need to take even more water. Loose clothing, sun screen (extremely important), wide brim hats and if possible, actually stay indoors. Hope this heat wave passes and we all remain well🙏🏾❣️

15/05/2026

Four days ago, I received the same message that many in the sickle cell community in Lagos Nigeria received; that Ms Toyin Adesola the founder of .update had been called to glory. I felt sadness immediately I heard and then a (fresh) wave of admiration for all she did and stood for while here. Bowing out at 60, she lived a life with sickle cell and its many complications, but she chose to make that life count by always advocating for sickle cell warriors, despite her own challenges and pain. That selfless act is something that people like me can only aspire to. We cannot talk about sicke cell advocacy in Lagos state in the last 10 plus years, without mentioning her and the positive impact she had on the community she loved dearly and was a part of. I remember meeting her at Arise Television in 2017 where we were both on Arise News speaking about living with Sickle Cell and its many challenges. I was just starting out in my advocacy journey and I remember looking at her and being inspired.
I pray that God comforts the entire Adesola family, all staff of SAMI, friends, acquaintances and beneficiaries who mourn her. Her memory is already blessed. Sleep well Aunty Toyin, now it's time to take your rest💔🕊️🥀

17/04/2026

We need to be listened to especially when it comes to bleeding one or getting venous access. Use the ultrasound if you have to, instead of just going in blindly and saying 'sorry' afterwards. We are human, the fact that we don't cry out in pain doesn't mean the constant poking isn't painful. Please do better. Do not add to the pain that we already feel.
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15/03/2026

Happy Mother's Day to all our wonderful warriors that are mothers and soon to be ones. Happy mother's day to all the mothers of warriors, it is no mean feat and we know that you are the backbone of support to your warriors. We also remember our angel mums in heaven who keep watch over us. Also to all our female guardians, aunties, sisters, cousins, care givers etc. To all our female HCA's, healthcare workers, nurses and doctors too. Combining motherhood with sickle cell in any capacity is not easy at all, but you all do so and you do it well. You rock.

14/03/2026

Yesterday, I had my first Red Cell Exchange as an outpatient this year. The previous two have been as an inpatient. It can be very overwhelming spending long and repeated periods in hospital, but as warriors that we are, we just have to buckle up and march through it. The last seven months have been a bumpy ride for me medically, but in between, I have had very good times with family & friends and created beautiful memories. If you live with sickle cell, please don't let the condition control your life. You owe it to yourself to have good times and memories with those that matter most to you. Sending love to all warriors ❣️ And as always, thank you to all blood donors 🙏🏾❣️🩸

sicklecellwarrior
sicklecellawareness sicklecelladvocate sicklecelladvocacy

09/03/2026

Sickle cell is the most common genetic blood condition in the UK and predominantly affects Black communities. Despite this, there is limited UK research on how housing and environmental factors impact Black ethnic minority adults with sickle cell. This Doctoral research at De Montfort University explores how housing conditions impact the mental well-being and quality of life of Black ethnic minority adults with sickle cell in the UK. The study has received ethical approval from De Montfort University.

 

To take part, please use the survey link : https://dmupsy.qualtrics.com/jfe/form/SV_5p4WOPk6IjX078G