The diagnosis was upsetting but identifying her illness also gave her a sense of relief. She had known for some time that something was fundamentally wrong. Poppy reacted to the news better than I did. He told us that although we can do our best to alleviate some symptoms, there is no cure. Poppy had enough symptoms to qualify for hEDS, and the diagnosis was confirmed by a doctor one year ago, on Christmas Eve. The list includes a hypermobility rating, known as the Beighton Score. However, the genes that cause hypermobile EDS (hEDS) – the most common form, accounting for about 90% of cases – are unknown, so diagnosis is based on a checklist of symptoms. Most types are very rare, and can be diagnosed using genetic tests. There are 13 types of Ehlers-Danlos syndrome (EDS), according to research and advocacy organization The Ehlers-Danlos Society. I hadn’t – so as soon as I got home, I went looking on the internet. “Have you heard of Ehlers-Danlos syndrome?” the podiatrist asked me. Could she pull her little finger back to form a 90-degree angle with the back of her hand? She could do that, too. Then, in October, a breakthrough.Ī podiatrist who was measuring Poppy for insoles to support her aching feet asked if Poppy could bend her thumb to reach her forearm. I took Poppy to doctors who conducted tests, but they couldn’t find out what was wrong with her. We found one that folds up and fits neatly in her school bag. She was always exhausted.īefore her health declined, Poppy had enjoyed horse riding and gymnastics, she’d competed in cross country races and been a fearless goalkeeper for the school hockey team.īut within a couple of months, as walking became increasingly difficult, she asked me for a walking stick. It wasn’t a serious wound, but over the weeks it didn’t heal.Īround the same time, her wrists and knees became sore her ankles started rolling when she walked her hands began shaking her headaches and stomach aches became more frequent and intensely painful. One day in July 2021, my then 15-year-old daughter Poppy stumbled and fell while walking down some stairs, grazing her knee.
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