We are Nina Parsons and Leah Boxall and we both suffer from EDS (Ehlers Danlos Syndrome).
We are not medically trained – however, we have suffered from the extreme complications of the brain and spine from EDS, and we wanted to share our opinions and advice based on these experiences.
We are unfortunately not a charity, just two individuals whose lives have been greatly affected by Ehlers Danlos. Nina has already had life-saving surgery in the USA and Barcelona, and Leah is hoping to see Dr Gilete in Barcelona for the same Chiari decompression and spinal fusion. BUT WE NEED YOUR HELP PLEASE!
We are telling our stories to help with awareness on these particular life-threatening and life-destroying conditions. Currently, surgical intervention is only available in the USA and Barcelona. We are denied this in the UK, and we want to fight for this to change.
We will be delivering you the latest news on CCI, CM and TC. Our aim is to inform and raise awareness about these illnesses. We will also be writing about our personal plights, including Leah’s fight to get the treatment she needs.
Please follow and share, and please read our stories, interviews, factual info and links. We want to provide safe help to people suffering with connective tissue issues! Please email us with any questions, and we will try to help where we can.
EDS lives matter! Time for change! #zebraseverywhere