Hooray you found me! Welcome to my Blog.
It is important for me to show the world what it is like being a mum with chronic illness while raising my children to embrace their perfect imperfections.
My aim is to raise much needed awareness about Ehlers-Danlos Syndrome (EDS) and Charcot Marie Tooth Disease (CMT) without a pity party, to inspire others to approach the management of their health with a positive attitude. All you need is a little confidence, a pinch of determination, a good sense of humour and a smile.
There are lots of ways to use this site. You can jump straight into the main parts of the blog, where I talk honestly about my life, management of our conditions, school, my family and diagnoses of EDS, CMT and ME.
Or you may want to just start by reading a little more about me and my family.
Don’t forget that you can get in touch by email or subscribe to our newsletter above to stay up to date with new content. Please jump right in and comment on posts. I’d love to hear your perspective.
I’m slightly addicted to Facebook and twitter where I regularly share news from the community. Instagram is where I post the top picks in My Stripy Life or follow me on Pinterest where I catalogue my favourite memes, quotes and pictures from the chronic illness community to inspire our followers.
From the menu above you can find all the detailed information that you need to know about EDS and CMT from The Ehlers-Danlos Society and CMT United Kingdom including symptoms, diagnosis and types. Like London buses they always come along in two’s 😉
I am a proud member of the Chronic Illness Bloggers Network a growing network connecting bloggers and businesses. You can also find me on The Mighty, the disability, disease and mental illness publication with over 150 million readers, where I am a chronic illness writer. I also write for charity publications such as ComMenT (CMT UK) and Fragile Links (Ehlers-Danlos Support UK).
So grab a cuppa, put up your feet and hang around a while, we are all friends here.
This was a post I made last year for awareness month as part of EDS UK’s share your story campaign. Its a little dated in terms of how…
This week one of my daughters school friends had a diagnosis of type1 diabetes. He’s just 5 and has been her boyfriend since nursery. I can not begin…
I’m not going to dwell on the detailed science involved with EDS and CMT, the genetics behind the conditions so to speak. I may get into that all…
An Open Letter To Teachers of Children With Invisible Illness Writing my latest blog entry has been an emotional and cathartic experience. It is based on supporting my…
An open letter to teachers of children with invisible illness I know that teachers want to do the best for my children, I can see it in their…
I question, should we even try to fight for a diagnosis or better care when we have a rare disease… I have been thinking carefully over the last…