Thursday 10th August 2023
I've been dreading has arrived! It is officially real and not just me thinking the worst...
The infusion medication that has transformed my life over the last 3 years via the STAND trial has officially been pulled!
I'm not sure what the next steps are right now, and to be honest, I'm not in the head space to even think about that right now.
Several other trials have failed recently, too. 😩
Saturday 5th August 2023
I'm excited to be trialling a health scan watch to see if it can support people with sickle cell disorders and thalassemia.
I have avoided smartwatches as I know I can get hyperfixated, and the health anxiety can kick in, but this time, it is for altruistic reasons, so hopefully, that will help.
I've been doing really well at the moment, I am officially, 3 years without a crisis (minus the complication from my back surgery), my fibromyalgia flares have settled, so I am now back at the gym. 🥳
I've been increasing my flexibility and range of movement, lifting weights so I am getting stronger and improving my posture.
Now it is time to just avoid the cycle of boom and bust that makes me prone to burnout 🤞🏿and I'll be a mega happy bunny 😊
June '23
I've had the honour of growing and developing my role as a patient advocate. Over the last month, I've presented in front of the European Medical Agency and the Medicines and Healthcare products Regulatory Agency.
I've been part of the panel discussion at Pride highlighting misconceptions with disability and intersectionality as well as part of the pride parade for pride in London with England Netball.
Professionally things have kicked into another gear, I was nominated (three times 🤯) for the staff awards, and I haven't even been there a year. I was accepted into the Q community, a space for innovation, networking and change mind set.
But, still, I'm full of self doubt, imposter syndrome, and shock with all of it.
Trying not to overwork and a coping strategy or a way to take control when life feels like you don't really have any control. Instead, I'm trying to be present, in the moment, enjoy them and all of the feelings they bring.
March '23
Sickle cell awareness event "sickle cell and blood transfusion - the future" at Cambridge University hospitals.
January '23
3 years on the trial for Crizanlizumab!
5mg dose unblinded and feeling good.