The Ann Conroy Trust
This week’s Syringomyelia Saturdays post is about the only Syringomeylia & Chiari Malformation organisation in the UK – The Ann Conroy Trust. If you’d like to learn more about the organisation please keep reading, & if you’d like to donate you can find information about how to do so here.
All information in this post has been taken from the official
Ann Conroy website & all information belongs to them.
Today’s Medical Mondays post is going to be about one of my more recent diagnoses. Interstitial Cystitis is a bladder condition that is similar to the more well known condition of Cystitis, but instead of being curable & temporary, Interstitial Cystitis is incurable & permanent, but treatable.
This post will include digital illustrations of a medical nature.
Unfortunately I won’t be posting a Medical Mondays post today as I haven’t pre-written anything & I’m too tired to do so today… which is actually a little ironic. Hopefully things will be back to normal next week, when I’m hoping to write a post about my interstitial cystitis, so stay tuned!
This weeks Syringomyelia Saturdays post has been written by an online friend of mine called Ross. Ross doesn’t just have syringomyelia, he also has a condition called Chiari Malformation; a condition that often comes hand-in-hand with syringomyelia. There are two types of Chiari Malformation; the most common type is Type 1 & involves the back of the brain slipping onto the spinal canal; this puts pressure on the brainstem & spinal cord which causes a whole bunch of issues. You can read more on the NHS website & you’ll find Ross’s story below!
This week’s Medical Mondays post has been written by my fellow book-loving & chronically ill blogger, Betsy. Betsy first approached me when I asked my Twitter pals if any of them had had a hard time with medical professionals & would be up for guest-posting for this series; when I heard some of what Betsy had been through I knew hers was the kind of story I wanted to be told through Medical Mondays. Betsy has struggled with anxiety, depression, OCD & anorexia nervosa for many years now & her experiences with the NHS are even worse than my own; what’s written below isn’t an easy read, but it is important. This is Betsy’s story…
This week’s Medical Monday post has been co-written by 24 year old Poppy. A couple of weeks ago I posted about my personal experience with job hunting & this post tells the story of a job training day from hell that Poppy experienced a while ago. In her story Poppy mentions The Disability Discrimination Act 1995 & I’ve added some information about the Act onto the end of the post.
Poppy herself has Ehlers-Danlos Syndrome, which is a connective tissue disorder. The condition, which is often referred to as EDS, can cause a huge range of complications & issues, but the main ones are joint hypermobility, skin hyperextensibility & tissue fragility (this information has come from The Ehlers-Danlos Society webpage which you can find here).
Today’s Syringomyelia Saturday post is going to be another story from someone else I’ve met online who has syringomyelia. Alisha is 24 years old & this is her story…
In the last few years I have taken quite a lot of different medication so I thought I would write a post for this series about everything I’ve taken & my experiences with it all. This probably won’t interest a lot of people but I wanted to do it anyway just incase it ends up helping just one person deal with their chronic pain. I’m only going to talk about the medication I’ve used for the symptoms related to my syringomyelia, lordosis & fibromyalgia – I can’t remember all of the antibiotics I’ve taken because of my kidney & bladder.
As some of you will know I recently finished university, which means I am now spending my days online, trying to find a job. Job hunting is a draining & irritating task for literally everyone, but things are made more difficult when you’re not able to do manual work (e.g. lifting, stacking shelves, waitressing, cleaning, etc.). Due to this, I wanted to write a quick post about how difficult it can be to find a suitable job when you have a disability or physical illness.
Sophie is 24 & is one of the many people I have met through online support groups for syringomyelia; Sophie describes herself as “lucky” in terms of the disease as she is fairly symptom free & hasn’t suffered much because of it. Despite this, I wanted to include Sophie’s story in the collection of stories I’ll be posting for the Syringomyelia Saturdays series because it shows how diverse syringomyelia can be.