Wearing red for world sickle cell day 19th June (click here for the reel from 2023)
I really wanted to do something different this sickle cell awareness month...
There are lots of the posts and blogs I have seen have talked about the inequalities, the gaps in knowledge and the education around sickle cell, symptoms and barriers. So this month, I'm taking a different look at it all...
We focus a lot on what is to come, what we haven't achieved yet, and how far we are from the final destination regarding change, improvement and development, but how often do we reflect on the "small wins" along the way that get us to where we are now in this present moment!
I used to tell my GCSE/BTEC/A level students that life's journey to any destination is rarely linear. We often have to meander around barriers/obstructions and obstacles in our lives (often these are out of our control) to reach a destination and by that point, that destination may no longer be your end point but a new check point...Â
I was recently asked what message I should share with other sickle cell warriors this awareness month and I said - "let's celebrate our small wins", because heading up hill constantly is exhausting so let's acknowledge the progress and change we are making!
1. The increase in our visibility - social media, has allowed the sickle cell community to connect, share and engage with information, lived experience information, each other, initiatives, knowledge and have a voice... Just a quick search of the term sickle cell awareness on Insta brought up 1000s of posts, videos, reels and more...
2. Patient information groups - has allowed us to be involved in producing patient information booklets/process initiatives, informing teaching and training for professionals, awareness of clinical trials and research.
3. Better access to medications, treatments, connected and holistic care - developments have taken a huge leap forwards over the last 5-10 years and so many more trials and medication options are coming to the fore.
4. Service development - Red Cell Network's Haemoglobinopathy Coordinating Centre and the working groups that have formed out of it have been driving change and service development across the UK. They have delivered teaching sessions with patient involvement which is readily available to all to access and learn from (click here to access). These resources and work plus patient involvement, has spread this across the UK and we are moving away from the London systems being the leading drivers.
Don't get me wrong, we have a long way to go but let us just highlight a few of the positive things...
...when I was in school (early/mid 90s), the predicted age of survival was 40 for people with sickle cell... We hadn't realised how other haemoglobinopathies can combine with the known haemoglobin S (HbS) to form the various genotypes in the sickle cell disorder groups. You may have heard people refer to sickle cell aneamia etc this was used to refer to HbSS we now have HbSC (my type) and all the other forms HbS/α-Thal, HbSD, HbSE, HbSO-Arab, HbSβ0 + Alpha Thal and many more...
Some personal wins: (click links for more information)
My 40th birthday is coming up in Dec!!!
3 and half years on Crizanlizumab and the improvements in my life
Coaching and playing netball despite avascular necrosis of the hip and back surgery
And many more (so here is a photo dump also)... ... ...
