So last night was a bit of a rollercoaster!
I opened my emails to find a link to a 6:30pm meeting I had, only to find out that I'd been nominated as one of Sanius Health's Top 80 advocates and people in SCD for 2024, and here is a certificate and a promo banner to add to your Linkedin profile... I was shocked but also not sure it was right so sent it to a couple of my friends and logged into my meeting.
Fast forwards 2 hours and I find messages from friends saying "congratulations" which is lovely because my friends are awesome and have so much love, care and are the first to be proud of my achievements. But, one friend, looked through the entire booklet and said, "Wow, that's amazing. Wait, did you know you are number 28 and your consultant is number 16!"
No, I did not know. I had no clue because, I had just assumed it wasn't ranked and even if it were some of the names on the list have OBEs and are CEOs so its a fluke anyway so I'll be number 80 if it is...
I knew about this list, I saw last year's and promoted it on my social media bits, but I had no idea about how the list is put together or that I had been selected or anything about it. I still can't quite believe it...
The List
Sanius Health say they put the list together "to recognise these dedicated individuals, Sanius Health has compiled the annual Top 80 Most Influential People in Sickle Cell Disease. This list honours the accomplishments people have achieved over the past 12 months to advance SCD care, expand treatment access, amplify patient voices, and drive more equitable health outcomes globally. We celebrate remarkable individuals and groups furthering innovative medicines, improving patient experiences, and resolving that, together, we can conquer the myriad challenges SCD patients face."
Why I started Blogging
I started the blog and advocacy work because I was passionate about health inequalities and the disparity in care for people with SCD (approx 15K affected but 4 treatments, 2 have already been withdrawn) compared to cystic fibrosis (approx 10K affected but 500+ treatments) for example. I also started it as a cathartic way to track my journey through my hip surgery and then to update friends and family during lockdowns etc as I was working, then shielding and then working again so I really didn't see people.
The blog expanded and I was slowly invited to talk at events, and to share my experiences, knowledge and my niche healthcare incites with healthcare professionals, drug companies, medical licensing agencies and more... Having multiple chronic conditions which overlap and having 2 science based degrees (chemistry/sports science and diagnostic radiography) means that I am a nerd (and proud to be), when it comes to the human body, scientific discoveries and treatments. I volunteered to do the Criz drug trial for that reason and because it was rare to have a trial that included my derivative.
I'm a doer, I get on and do because that is what I know. I'm not a CEO or have and OBE or work in the SCD sector, I volunteer because it is important and I don't want people experiencing some of the things I have been through and definitely not a lot of the experiences that have been reported on in the media and through round table discussions and reports to the government.
What next
I have no idea. Like I said, I was not expecting this at all and it probably will not change anything at all. The one thing it will do though, is boost me to continue doing this on top of living life, working full time, being a single mum in a single income household and general badass!
I would like to be able to spend more time on the blog and advocacy work in general and maybe one day it will be my full time occupation who knows. For now, I will continue to campaign, raise awareness, promote the amazing work being done here in Cambridge and in the SCD realm in general.
Onwards and Upwards
