Sharing Bibi’s story this World Clinical Trials Day
To mark World Clinical Trials Day, Bibi a renal patient at the Trust, and Maya one of our Research Nurses/Research Sister share the transformational difference taking part in a clinical trial can make to someone living with a rare condition.
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Here's Bibi first recapping her journey, “When I was first diagnosed with FSGS (Focal Segmental Glomerulosclerosis) which is a rare kidney condition back in 2019, I was told there was no treatment available. It just seemed like my world fell apart. I still felt young, and I was worried I wouldn’t live to see my grandchildren. A little while later, I got a call from Maya to let me know the Trust were just about to start a clinical trial for my condition and she asked me if I’d like to take part.
"I came in, found out all about it from Dr Alchi here, and although I was a bit nervous as like most people I’d never really thought about clinical trials before let alone taken part in one, I trusted them, and I was willing to try anything to save my kidney function.
“It's a ‘blind’ trial, which means I don’t know what it is I am taking, but the treatment is just one tablet each morning. And when I came back for my first checks after three months we could see things were stabilising, and I could feel that some of the symptoms of my FSGS is getting better, my skin was less itchy, I was having fewer UTIs, my feet were less swollen. The blinded study officially closed after two years, but I was given the option to carry on taking the medication the trial is studying as open label, and I was more than happy to keep going.
“And here I am another three years later! It feels good to have taken part in a clinical trial as I see it will also help other people in the future to have access to treatments they need. And for me, I’ve got to meet my first grandchild, and the second grandchild is on the way!”
As a constant presence in Bibi's experience, Maya reflected, “At our Trust we are very much ‘research active’ and we approach as many suitable patients as we can if they would like to take part in a clinical research trial. Of the patients we ask, about 20-30% say yes. FSGS is a rare renal condition, and Bibi was the only patient at the Trust who was able to complete this trial it for its duration. Bibi continues to receive the medicine even after the trial has finished.
“I feel like we’ve shared the journey together, and it’s been great to see Bibi respond so well over the course of the last five years. Thanks to patients like Bibi, we’re able to gather the evidence we need to expand treatments like this more available to patients within the NHS. I’m grateful to Bibi for taking part, and so pleased to see how well she is doing.”