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Ehlers-Danlos Awareness Month- Abi’s experience and blog

Posted By Donna Wicks, May 18, 2013

Abi Stafford – HideAndSeek Invisible Disabilities Blog


Abi Stafford, Uni Student and Blogger

Abi Stafford, Uni Student and Blogger

My name is Abi and I was diagnosed with EDS hypermobility syndrome type at the age of 16 by Professor Grahame at UCLH in London. Before this, I had experienced about 9 years of frequent pains in my legs and joints which was often misdiagnosed as either growing pains, Osgood Schlatters, shin splints etc. 


Although it was an initial shock being diagnosed with a hereditary condition after years of suffering with the symptoms I was so relieved to finally have a correct diagnosis.


After my diagnosis the support I was given was invaluable, I attended monthly meetings at UCLH with a support group of peers my own age and made many friends which I still keep in regular contact with. I was offered Tai Chi classes to strengthen my joints along with physio and regular support from all kinds of doctors.


During my treatment process, I came across many people that had been in a similar situation to myself and this got me thinking. Although EDS is still considered a rare condition and few people know about it, (hence why it takes so long for many people to be diagnosed), more can be done to raise awareness about it and offer support to those that need it, especially those that may not have been diagnosed yet.


This is why I set up the blog HideAndSeek Disabilities which reaches a global audience of thousands of people each month and is a platform where I and others share information about invisible conditions in the hope to raise awareness and ‘make our invisible visible’.


As May is EDS awareness month I am posting regular weekly content with info about the different types of EDS and how people are getting involved in the awareness campaign. 


I am now 19 years old and I’m in my first year studying an English language degree at Aston university in Birmingham. I also work as a freelance journalist and continue to promote awareness about EDS and other invisible conditions by writing my blog and other articles where I can. 


Here is a link to my blog: 


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