Woman with Ehlers-Danlos Syndrome (EDS) Has Painful Dislocations 10 Times a Day

When Jojo’s doctors told her she had Ehlers-Danlos Syndrome, she felt relieved! “Finally, I had an answer to why my body is the way it is.”  Her Ehlers-Danlos Syndrome went undiagnosed for 24 years! Unfortunately, this is not uncommon. Our EDS Poll indicates that more than 50% of EDS patients wait more than 20 years for a proper diagnosis.

by: Clement Ejiofor

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A 38-year-old mother of five suffers from a rare condition which makes every move dangerous for her life.

“Jojo Meadows, a victim of Ehlers-Danlos Syndrome (EDS), has her bones  painfully dislocating up to 10 times a day, Daily Mail reports.

Thus, opening a door, driving and even yawning contains risks for the woman.

“My bones pop out so often, that sometimes I don’t even notice it. The worst one was when I dislocated my jaw so I could barely speak. My four-year-old son was shouting down the phone to 999 telling them that my mouth had fallen out.”

“My kids were doing handstands and I decided to join in – before I even thought about what I was doing I broke both my wrists.”

The woman confesses that every such dislocation is accompanied by agonizing pain adding that she gets admitted at hospital “around 100 times a year”.

The woman’s disease is genetic and means  that she has broken or dislocated almost every bone in her body.

Jojo narrates how she first realized that she was different from other children.

“I noticed the symptoms when I was still at school, but I didn’t get a diagnosis for 24 years. Doctors were stumped until I had a hysterectomy in 2009, and a doctor referred me to a joints specialist. When they told me I had Ehlers-Danlos Syndrome  I was relieved, finally I had an answer to why my body is the way it is.”

“Since I was diagnosed I’ve had to be more careful, but equally I don’t let anything get in my way. It could easily let the condition disable me and change my temperament but I’m not going to let it, I’ve got a life to live, beautiful children and a lot to be thankful for.”

Add your diagnosis experience to our EDS Poll, located in the right column on our homepage.

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 652 Votes)
  • 1 year (5%, 264 Votes)

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