Today I had a very successful hospital appointment at the National Hospital for Neurology and Neurosurgery with the neuromuscular team, seeing Dr Ros Quinlivan. The outcomes of the appointment could be crucial for myself and my family, and turn everything…
I am a medically complex patient who spends long periods in hospital, whose care is spread across 7 different London hospitals with about 12 consultants involved in my care, and who relies on and is kept alive by our NHS.…
Fifty-five thousand. 55,000! That’s how many views this blog has amassed at the time of writing this post. 55,000 people over the past 22 months have read my blog, or at least one of my posts. That’s 55,000 people educated…
This is a post about my health (be warned, it’s a long one, I’ve tried to trim it down as much as I can) (it’s also a bit graphic, so perhaps don’t read this before/while eating). For better explanations of…
We’ve all heard of cancer; the dreaded “C”. While there is still much to learn about cancer, and many lives lost to or affected by it, there are lots of charities to support these people and their families and a…
Recently, my health has deteriorated again. Last year was a fantastic year despite my health and, though I was poorly, I was relatively stable in some aspects. I pushed myself harder than I thought possible to sit up, building up…
Today is rare disease day. I have a few rare diseases, so jeans for genes day is very important. Ehlers-Danlos Syndrome, though the hypermobility type is becoming more common, is considered a rare disease with a prevalence of 1 in…
Here is my video explaining my life with my conditions.I hope you all like it, let me know if you want me to do more videos in the future x
I am well aware that I must sound like I’ve swallowed a medical dictionary and talk in medi-speak (thanks to Stephanie Nimmo for that word!), and not all of you will understand what I’m going on about. I will provide a…
I’ve been meaning to get my blog up and running for a while, I created it a few weeks ago and haven’t written a post yet. I apologise for that. I’ve struggled to write anything legible and remotely interesting due…