Published: 26/11/2016 Tags: Ehlers-Danlos in the News

The girl who cried Zebra

It’s a beautiful sunny day in August. A young woman named Jennifer and her mum go to the beach to soak up the rays. On her way into the water, Jennifer’s right wrist starts to hurt, and then her left wrist does the same. The pain is excruciating. She doesn’t know it, but they have dislocated. She and her mum can’t understand what has happened. It makes no sense. Distressed and confused the two women go home. Jennifer’s mum drives the car, and while sitting in the passenger’s seat, Jennifer dislocates her ankle. She doesn’t know that is the reason for the agonising pain. The two try to make sense of the situation.

The next day Jennifer goes to work. The pain worsens. A long and troublesome day is over; Jennifer goes to the Walk-In clinic for advice. The ankle is swollen, and the doctor gives her a splint for it. The wrists have no obvious injury. The doctor doesn’t believe her story about the beach. She’s told to rest her ankle. The pain gets worse.

A few weeks later her hip dislocates. She doesn’t know why. Finally, she goes to see her doctor. He doesn’t believe her. He won’t agree to any tests or scans. He gives her anti-depressants and assumes she’s being over sensitive. Attention seeking.

Jennifer leads a busy life, always has. She has always been accident prone, always tired, problems sleeping, low immune system, delicate digestive system. Her joints hurt all the time. She gets dizzy. She thinks it’s normal. Her mum and grandmother say it is. Things get worse. It takes four more years of battling with doctors and specialists, but finally, she gets a correct diagnosis. Ehlers Danlos Syndrome Type 3 with Marfanoid aspects. But that’s not all. She is also diagnosed with Postural Tachycardia Syndrome, Migraines, eczema and Irritable Bowel Syndrome. By this point, Jennifer has been fired from work for taking too many sick days. She has no friends. She has moved in with her mum. She’s on pain medication that makes her feel sick. She’s in a wheelchair. Her depression is worse.

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