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I am running three 5K's in three months to raise vital money for Ehlers Danlos Support UK: - Leeds Big Fun Run 5K on Saturday 5th August - Decathlon Series 5K Sheffield on Sunday 3rd September - Bramham Park Run 5K on Sunday 1st October.

I was diagnosed with Ehlers Danlos Syndrome when I was 20 years old. I always struggled with my joints and being super flexible, which provided me with awesome party tricks, but also gives me constant pain, dislocations and other associated health problems such as gastro and autonomous system conditions. 

Ehlers-Danlos syndrome is a group of conditions that arise from genetic alterations in collagen. Collagens are proteins found throughout the body. There are a number of different types of collagen in the body, often found together in very particular combinations in different body tissues. We all make the same collagens, distributed throughout the body in the same way. The collagens give strength and support to, for example, skin, bone, blood vessels, the gut, and tissues in and around joints such as ligaments, tendons and cartilage.

The production of each type of collagen is genetically determined. Alterations to the genes that are responsible for either making collagen or allowing it to function properly can result in weaker or more fragile and stretchy tissues throughout the body. As a consequence of this certain physical findings and complications arise. It is the recognition of these patterns of physical signs and the identification of specific gene alterations that allow clinicians to separate out the different types of EDS.

The Different types of EDS

There are several forms of EDS. Looking through the list of types might seem a little daunting, but for the majority of individuals the diagnosis is most likely to be the Hypermobile type (hEDS), followed by the Classical (cEDS), then the Vascular type (vEDS).

All share common features, such as flexibility (hypermobile) and often instability (subluxation or dislocation) at the joints; abnormal skin (from mild papyraceous scars and stretchmarks in hEDS to severe atrophic scars in cEDS; and other fragile body tissues e.g., weak abdominal wall leading to hernias, stretchy blood vessels and varicose veins, and thin heart valves. However, some types have more severe physical signs than others, and some have unique characteristics too.

Apart from the Hypermobile type (for which there is no definitive genetic test at present), genetic abnormalities have been found in most types of EDS but may not be easily identifiable in every case.

I have been fortunate enough to have an excellent team of surgeons, consultants, GP's, nurses, physiotherapists, OT's and other specialists care for me from birth to the current day who have helped me. From their help and expertise and my own determination to get strong again I have grown my strength and developed a passion for running. This passion is hard work, exhausting and results in pain and injuries but not only has it helped my physical strength, it has helped my mental strength to not let this condition rule my life!

I want to raise as much money as I can for vital funding for EDSUK to raise awareness and fund research and events for Ehlers Danlos Syndrome! EDSUK also run national support groups that are run voluntary by local area coordinators. I went to my first meeting a few years ago, a shy and reserved individual thinking no one else understands what I was going through; but I found a group of likeminded people who understood exactly what I was going through, and they were too! This group helped me grow as a person and I owe a lot to everyone in the group and EDSUK for facilitating such a great platform for helping each other. 

Thank you so much for reading my story and please donate anything you can to help others struggling with EDS, those who are seeking diagnosis and improve the future for people present and future with an EDS diagnosis!!