A Sheffield woman, who faces daily battles with a rare inherited condition, is hosting a 12-hour runathon to raise money for charity.
Jenny Anne Blackett suffers from hyper-mobile Ehlers-Danlos syndrome (EDS), which affects around 1 in 5000 people globally. The condition affects connective tissues, resulting in symptoms ranging from frequent joint dislocations to digestive problems.
Jenny, who works as a special needs teacher, said: “Some people might just get joint dislocations like I do; whereas people like me have a heart murmur to contend with, kidney problems, dysautonomia, anaphylaxis.”
As an avid korfball player, a ball sport similar to netball and basketball, Jenny has had to balance her love for the sport with the challenges EDS poses to her.
She explained: “ I play a lot of sport, but I have to make sure people in the situation with me understand that I might have to put a joint back in, or if I’ve had to have a big hit in the back and I say ‘stop’, I might have to go to the hospital.
“On top of that, is the physical exhaustion from constant joint pain, dislocations, fainting, which makes you so much more fatigued – which is the thing I sometimes struggle to explain. They’re saying ‘you played in a sports match’, but I’m saying I can’t go and see them, or I can’t do something around the house that day.
“The physical exhaustion from doing the things that make me mentally happy, like working and playing sports, means that sometimes I’m so tired that I literally can’t communicate with people and I need to lie down, which I think sometimes is hard for people to understand.”
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.
Jenny added: “I managed to get a really good group of people together. I’m 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.
“I’ve 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’s tire ourselves out and see if we can get some insight as to what it’s like to live a day with EDS.”
All proceeds from the event will go to Ehlers-Danlos Support UK, a charity which funds research on the vastly under-diagnosed condition.
Jenny said: “This is not to say anything bad about the medical community, they’re wonderful, but I cannot tell you the amount of times I’ve turned up and a doctor has said ‘I don’t know anything about this’ and ‘I don’t know how to help’.
“Specialists 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’t 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.”
Donations can be made to Jenny’s GoFundMe page.