I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS is part of The Ehlers-Danlos Syndromes), Dysautonomia, Autonomic Dysfunction, Postural Tachycardia Syndrome (PoTS), Autonomic Mediated Syncope (AMS), Orthostatic Hypotension (OH), Dermotographism and Mast Cell Activation Syndrome (MCAS) in August 2014 at 21-years-old. This was shortly after I graduated with BSc Hons Geological Sciences from the University of Leeds (England) and just before I began my Masters at Imperial College London. There are no cures found yet for EDS and the following I was diagnosed with in the list above.
In an ideal world, I would love to hear you all cheering as a crowd shouting “YES”, but that would be a stretch to my imagination. I wouldn’t be surprised if many of you haven’t heard of these conditions and that is one of the following three reasons why I have started this blog:
Firstly, I have undergone 4 critical lifesaving neurosurgeries and brain surgery (insertion of 3 stents) since January 2016 in the U.S.A. as there are no EDS specialist surgeons in the U.K. or Europe who exist. To everyone who has asked me to keep them up to date with how my surgeries have gone and my road to recovery, this is for you! If you haven’t heard about my story yet, please do support by clicking here, spread the word and help keep my fundraising campaign alive!
Secondly, to share my personal experience battling with hEDS & PoTS, and to offer support to fellow sufferers, their family and friends. I will be sharing with you all my mind and body methods that I have discovered through trial and error that have helped me cope. I will be covering all important aspects of hEDS life, such as how I try and keep active and fit, ideas of foods and recipes (I have a never-ending list of food intolerances!), continuous rehabilitation (physio, hydro etc.), pain management, the mind, meditation…and yes, I could keep going but I will let this blog evolve and see what else I come up with!
Thirdly, to spread awareness and educate you and everyone who visits my blog on hEDS/EDS & PoTS. I hope to at least to give a glimmer of an insight and understanding of the true reality of how challenging this rare, invisible, genetic disease is to live with and the difficulties we face each day as sufferers – and even possibly inspire you all to never give up!