My Story – Karolina Barnes, editor-in-Chief
I have been diagnosed with a benign brain tumour in 2007, while 10 weeks pregnant with my younger daughter. My condition is called meningioma and it sits between the back of the eye and my brain. Due to initial misdiagnosis and quick progress of growth while being pregnant, I lost vision in my right eye within 8 weeks after being properly diagnosed.
I was told that it’s inoperable and there is only a very limited treatment option for me. I always thought that this is because it’s rare. Not many people have meningioma in the place I have it. I had two types of stereotactic radiotherapies – one was a gamma knife, which only works for tumours of small size. Even though mine was larger, I got treated for one half of it and then I had targeted beam radiotherapy everyday over 12 weeks for the other half. Now I’m on “watch and wait” but the radiotherapy in 72% works for up to 10 years. If it starts growing again, they don’t know what options I could have since radiotherapy can be done only once.
I accepted that prognosis in a hope that technological advancement will provide some more options for my case. However, after speaking to a few other patients and people with brain tumours, plus last year’s Tessa’s speech in the parliament, I learned that most patients are like me. Their treatment options are very limited.
Then I learned that brain tumour research is seriously UNDERFUNDED. So I want to help as much as I can. Through ESTILA bookazine, our collaborative projects, events and our e-commerce site (coming soon), I want to help raising money for the Brain Tumour Charity UK.
If you purchase ESTILA yearly subscription, we donate £7 (20%) directly to the charity. You can purchase it on: https://estila.co/shop/yearly-subscription/
I encourage you to subscribe to our newsletters so you are updated with projects and opportunities to get involved. I’m also keen to hear about an event, pop-up, product collaboration or your ideas about how we can work together. I’m happy to work on suitable and mutually beneficial projects which would help to add more to the pot. Get in touch here.