About

My name is Alex, I am twenty two years old and I reside in a small town in the South West London area with my beautiful pink pawed calico, nicknamed Bo. I enjoy simple pleasures such as reading, writing, taking photos, tea drinking and daydreaming. When I am not stuck at home with the moggy, I like to go travelling and set about on perilous quests in the hope of bringing home ultimate glory and riches to my tribe.

I have a chronic condition called Ehlers Danlos Syndrome (also known as Hypermobility syndrome or JHS), which was diagnosed in January of 2014 and also suffer from autonomic dysfunction. EDS is a genetic disorder that affects connective tissue, this means that my body is not strong enough to support itself so I hyper extend, and suffer from frequent dislocations and subluxations.

I have found that it is such a struggle trying to understand and effectively treat this due to the lack of information that is available to me, this could be due to the fact there hasn't been much research done in this area and the lack of awareness, not to mention the fact that there is debate about the different names for the condition. Anyway, since then I have made the decision to actively educate not only myself but others also, and to try to raise awareness for not only this debilitating illness, but all chronic and invisible illnesses.

 



 

 

Prior to my diagnosis I had spent the past year in debilitating pain, desperately moving from consultant to consultant to find the answers that I was seeking. I was written off as delusional and told that it was all in my head, it was only by chance that I managed to get a second opinion with a rheumatologist and after minutes into the examination I had a diagnosis.

I am still in chronic pain on a daily basis, but I hope to learn to manage this condition, reconstruct my life and document my journey along the way. I believe that writing this will help me to get to where I need to be, and I hope that the experiences I will share benefit others that are suffering along side me with a chronic illness or disability. I also plan to write about my crazy adventures so stick around to see what you can get up to with a chronic condition and a warrior's mindset.