ABOUT ME

 

Hi, I am Rebecca and in July 2014 my life changed, I developed a rare heart condition called Prinzmetal's angina. Mine is particularly special because to date it has not responded to the standard medication. This means I have an average of around 20 spasms (angina attacks) a day, when I say day I actually mean all night as well, in fact the night time is usually worse than the day time. I also at the same time developed an autoimmune condition that still doesn't really have a name, though I am told it is probably something I always had but has been exacerbated by vaccinations that I had in May of that year to go on holiday. I am phenomenally fortunate that I have an amazing team of doctors looking after me and an incredible husband and family.

 

There is so little information around about Prinzmetal's and having that diagnosis can feel like a lonely place which is why I have set up this website. There is even less information around about Prinzmetal's that doesn't respond to the standard treatments. I hope to be able to publish links to recent papers published about this condition and keep a blog for anyone that happens to be interested.

 

In March 2016 I finally received a diagnosis of Ehlers Danlos Syndrome, which is the underlying condition that has been causing not only the Prinzmetal’s angina but also gastroparesis (requiring a feeding tube), autonomic dysfunction, widespread pain, chronic fatigue, osteoarthritis in all my joints, spontaneous joint subluxing and dislocation - causing spinal fractures, secondary Reynaud’s phenomenon, vascular spasm in my brain resulting in parkinsonism’s, migraines and this list could go on forever so I am going to stop there.

 

As I said at the beginning, I am not a medical doctor so if you need medical advice please see a suitably qualified doctor and if you are having severe chest pain, please stop surfing the web and get yourself checked.