May is EDS Awareness Month. Ehlers-Danlos Syndrome can mean different things for different people, but it is a group of rare inherited conditions that affect connective tissue.
Most commonly it can affect several areas of the body including; skin, tendons, ligaments, blood vessels, internal organs and bones. Sufferers can deal with several problems including joint hyper mobility (a range of movement), stretchy skin and fragile skin.
Jenii Caitlan Robinson, 22, talked about what EDS means for her. In 2014 doctors told her she had symptoms of the condition, and she was diagnosed last year. She said some people don’t understand that her EDS can be controlled one day and not the next. “Things I used to be able to do, I can’t do anymore. I’ve lost a lot of friends because of it,” she said.
Flare-ups can also be a problem for sufferers, including Jenii. This happens when a person does a lot of experience or activities in one day and doesn’t have enough resting time. They may end up being unable to do anything for a few days afterwards because their body shuts down in order to recuperate. “Sometimes I can be in bed for days and days. And once I was in bed bound for two months,” she said.
Jenii says she finds some days a lot harder than others but wants to keep going and being strong.
“I don’t think I am strong or inspiring like other people think I am. I just don’t want to let anyone down. I want to help others like me.”
Her family and friends support is invaluable to her and she cannot imagine life without her parents, her support worker and her friends. She says they help her out as much as they can and she is especially close to her parents who she says have been amazing and helped her so much during the good and the bad.
Despite her positive outlook, times weren’t always this balanced for Jenii who was repeatedly ignored by health-care professionals. They only believed her after she asked to be referred for tests when she saw fellow EDS sufferer, Cherylee Houston (Izzy) on ITV’s Coronation Street. Jenii said she realised she was sat the same way and often positioned herself the same too. She met her idol last March on the set of Coronation Street.
Jenii is also always learning new things, she studied at Park Lane in Leeds for a while but was taken off the course due to ill health. She really enjoyed the Art & Design course but says she has met some great people since then. On a Friday she goes to Swarthmore College and studies music. And she also works at Cafe Leep, a volunteer run cafe with chefs and waiters who have learning difficulties or conditions. She says this has given her a new confidence and aspiration to do her best. “They help me so much more at Cafe Leep. I love it there.”
Even with her new found interests, Jenii misses being able to do art work, play the drums and volunteer with the elderly people in homes and disabled people at Mencap. But more than that she misses being pain free. “I miss being able to walk around which I can’t do anymore because my legs are unsteady my knees pop out of place comstantly.”
Although she remains positive and says she can still enjoy some time in the garden, gardening or enjoying the sun, she enjoys colouring in, trying new make up, watching YouTube videos of nail art and copying it and photography. “When I can’t go out I look out of my bedroom doors that lead to my garden and take photos of everything I see, I love doing that.” She wants other people with the condition to enjoy life and take each day as it comes.