A mother of five children has broken or dislocated almost every bone in her body due to Ehlers-Danlos Syndrome (EDS).
Jojo Meadows, 38, first noticed the genetic condition when she was 12 years old, after finding bruises on her skin.
“I noticed the symptoms when I was still at school, but I didn't get a diagnosis for 24 years,” Meadows said. “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 EDS I was relieved, finally I had an answer to why my body is the way it is. I'd never heard of the condition before but quickly researched it and found out about the condition very quickly, I now help doctors to understand the early signs of EDS.”
According to The Ehlers-Danlos National Foundation, individuals with EDS “have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a 'glue' in the body, adding strength and elasticity to connective tissue.”
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There are six major types of EDS, and each are classified by the manifestations of signs and symptoms. EDS is a distinct disorder that “runs true” in a family.
An individual with one type of EDS will not have a child with another form, but may pass on their genetic type to their offspring.
For Meadows, the effects of EDS have become so normal she does not even notice sometimes, but it is still painful, reports The Daily Mail.
“My bones pop out so often, that sometimes I don't even notice it,” Meadows said.
Her four-year-old son noticed when she dislocated her jaw.
“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,” Meadows said.
She broke her wrists on another occasion when she was doing handstands with her children.
But living with EDS will not stop Meadows from enjoying her life.
“Since I was diagnosed I've had to be more careful, but equally I don't let anything get in my way," Meadows said. “I 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.”
Meadows even continues to enjoy skateboarding, something she has done since her teen years, reports the Mirror.
"I can't do any jumps now because all my bones would probably pop out," Meadows said. "If I banged my head it could be pretty dangerous for me so I only have a slow roll around now. I used to go on motorbikes, but I ended up dislocating my arms when someone accelerated, so skateboarding is the best I can get.
"For me skateboarding is a way of not letting EDS get the better of me – it's showing that the condition won't defeat me and it's very liberating."
Meadows is involved in raising awareness for EDS. She travels with Consultant Rheumatologist Dr. Ayman Askari to hospitals teaching doctors how to spot early signs of the disorder.
"It's a very rare condition so on the whole doctors don't think about it because it doesn't have any cure or medication to eradicate it,” Dr. Askari said. “It's not like a sore throat that you can cure, it's a life-long condition that will forever be with you."
Dr. Askari hopes to see further research done on EDS, including gaining access to genetic testing facilities and teams of physiotherapists to assist with hypermobility issues.
“The essential treatment for EDS comes through physiotherapy, additionally diagnosing the condition removes a lot of the anxiety patients suffer caused by worrying about their symptoms,” Dr. Askari said.
Meadows wants additional support to be given to people with EDS, especially during pregnancy as she suffered a horrendous ordeal during one of her own where she was left bedridden and her 15-year-old son had to do everything for her as she could not walk.
"He had to feed me, carry me to the shower - it was horrendous,” Meadows said.
“But now I want to move forward and look to help doctors provide support. I'm not here to criticise or condemn. I want to help however I can."