15 months ago I entered the world of chronic illness which has been a rollercoaster to say the least. I was diagnosed with 3 rare diseases Hypermobiltiy Elhers Danlos Syndrome (hEDS), Functional Neurological Disease (FND) and Fowler’s syndrome, all within 3 months of each other and my world fell apart. Prior to my

diagnosis I was a staff nurse working on the frontline, I had bought my first house and welcomed both a kitten Jasper and a puppy Harris into the mix. I enjoyed music, the gym and just generally being outdoors.

Anyway rewind 15 months when I was given the diagnosis of hEDS. EDS is a rare connective tissue

disorder that causes the body

to create faulty collagen.

Collagen is the glue that holds

our ligaments, muscles, & joints

together. People who have EDS have tendons and ligaments that are more like toffee than rubber bands. Our joints dislocate often & our bones can grind together. Deficient collagen also effects other systems like eyes, skin, blood vessels, organ function,

dental health & more. There is no cure, but your awareness & understanding are crucial to those living with EDS.

Fowlers syndrome is another rare condition which affects mainly young women. It causes one of the muscles in the bladder to malfunction which leads to being unable to empty their bladder. Fowlers syndrome has now left me catheterised for the past 13th months.

Roughly 6 weeks later I was finishing my last of 3 night shifts when I complained that I had lightening going down my right leg and could not feel part of my right foot. My symptoms became progressively worse to the point I was admitted to hospital and transferred to the Institute of Neurology and Neuroscience in Glasgow . I spent 5 weeks in the Queen Elizabeth Hospital in Glasgow before being transferred to the Douglas Grant Rehabilitation Ward in Ayrshire where I spent a further 8 weeks supposedly getting intense rehabilitation. However sadly that was not the treatment I received and have now been left unable to drive meaning I am largely housebound , needing bilateral Ankle Foot orthosis splints to get my feet flat on the ground and also unable to walk more than a few meters using a Zimmer frame leaving me pretty much wheelchair bound when out of the house. These massive changes in my mobility have also meant I have had to give up a job I loved and reassess what my career options are. My poor mobility has also left me unable to do a lot of the things that I enjoyed in life such as rowing, skiing, gym classes and also having the ability to walk my dog.

FND affects every individual differently due to the number of different symptoms.One of the most common misconceptions about FND is that the individual is able to control some or all their symptoms. However the individual does not consciously produce the FND symptoms. Having FND is knowing you will always have to prove you are truthfully Ill. Living with FND is never knowing what will happen tomorrow, this hour, this minute or this second. Unfortunately not everyone who is diagnosed and experiences FND gets better.

Any money raised would be put towards either new customised wheelchair with an electric bike attachment or a new electric profiling bed. The 2 pieces of mobility equipment would allow me to be able to take Harris out a walk. They would also allow me to be able to go down the beach or make it easier to go over more difficult terrain when spending time outdoors. The Sleepmotion profiling bed would give me more independence around the simple everyday task of getting in and out of bed. The profiling action of the bed will also make it easier for me to stay sleeping upright to alleviate the dangers of me choking in my

sleep. The ability to also raise my legs will also make it easier for me to take the weight off my hip and reduce the risk of developing pressure. HEDS, Fowlers Syndrome and FND are all examples of indivisible disabilities which have been wildly underfunded to allow important research to be undertaken. Due to the lack of funding and research there are also very limited treatment options which are unable to be accessed on the NHS without great difficulty or encountering a post code lottery/ scenario.