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For EDS awareness month, Jenny will be joined by members of the Sheffield City Korfball club in a relay-style runathon, where they are also aiming to score 1000 korfball goals. The event will take place from 8am on May 28 in Endcliffe Park.<\/p>\n\n\n\n
Jenny added: \u201cI managed to get a really good group of people together. I\u2019m so lucky to have the support system that I have. They see week in and week out the trials and tribulations that come with EDS.<\/p>\n\n\n\n
\u201cI\u2019ve always said when I do fundraisers, the idea is to do something really challenging. For me, running that much in a day is gonna be really challenging on my body. And for a couple of people there, the aim is to do something really hard. Let\u2019s tire ourselves out and see if we can get some insight as to what it\u2019s like to live a day with EDS.\u201d<\/p>\n\n\n\n
All proceeds from the event will go to Ehlers-Danlos Support UK, a charity which funds research on the vastly under-diagnosed condition. <\/p>\n\n\n\n
Jenny said: \u201cThis is not to say anything bad about the medical community, they\u2019re wonderful, but I cannot tell you the amount of times I\u2019ve turned up and a doctor has said \u2018I don\u2019t know anything about this\u2019 and \u2018I don\u2019t know how to help\u2019.\u00a0<\/p>\n\n\n\n
\u201cSpecialists for EDS are few and far between. Diagnosis, on average, takes over ten years. I started going for appointments when I was in primary school, and I didn\u2019t get diagnosed until I was 19. My mum was in her 50s when she got diagnosed, so she had lived her entire life in pain without any help. This research might actually help people get a name for what they have, and not just that, but see people who actually know how to treat them.\u201d <\/p>\n\n\n\n