I’m Jade and I’m 27 years old. I live in Essex, England. My interests are social welfare, housing and politics, as well as crafting, jewellery making and writing.
When I was 15 I developed chronic pain in one joint. This spread into a second joint, and eventually into every joint and muscle in my body. I stopped being able to get through the day without crippling fatigue, and found I was gaining new and varied symptoms all the time. It took me a long time to get a diagnosis. In those eight and a half years I spent a lot of time and money searching for a cure, or any kind of relief for my symptoms. I saw some of the best and the worst of the NHS.
Ehlers-Danlos Syndrome Awareness
Finally, in 2011 I found out I had Ehlers-Danlos Syndrome (Hypermobility type) a genetic connective tissue disorder. I’d also acquired secondary Fibromyalgia, Postural Orthostatic Tachycardia Syndrome, Intestinal-Motility and Autonomic Dysfunction due to this. My mobility had become restricted by degeneration in my spine caused by the Ehlers-Danlos Syndrome, and I started using a manual wheelchair part-time in 2010 and became an electric wheelchair user in 2012.
I have worked for charities, social housing organisations and for a university. I’ve particularly focused on putting services in place for people with disabilities, older people and carers that make a difference to their lives.
In 2010 I joined the local Disability Access Group in my town, and by the end of the year was running it as the Chair. I campaign on both local and national issues that impact the constantly eroding rights of people in this country, particularly people with disabilities who face the worst of the changes and cuts to the welfare state. I also remain interested in housing – particularly improving laws for tenants in the private sector, as well as issues surrounding homelessness.
In 2013 I sadly had to stop working due to my health, but remain hopeful that things will improve and I will find a way back to working on the services I’m passionate about.
I enjoy making jewellery, including disability awareness items for ‘rare’ conditions and have a website and a page on facebook to show my creations.
One of my bracelets
I have three tabby cats – two rescued as strays, and one as a kitten dumped by his previous owner.
Button, male – picture taken at approx 4 years old.
Bailey, male – picture taken around a year old
Pepper, female – picture taken around eight months old
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